If you fail to plan, plan to fail

If you fail to plan, plan to fail

My dad and probably most of the great coaches you ever had have uttered those exact eight words.  They are simple, obvious, and so underutilized. How many folks do you know that just go through life simply hoping for the best?  How many kids when you were young dialed it in and figured they’d “do okay” on the test? Preparation is the key to almost everything.  Clearly you can’t prepare for any and every possibility, but you can, in fact, get the big rock stuff (rocks in a jar) more or less squared away.

I changed financial advisors about 11 years ago when we watched almost 30 percent of our assets take a dump.  We moved to a new guy who was a member of our golf club.  His book was comprised of mostly older folks but he made one very big impression on me.  He said, “Marco, on the investment side there isn’t much I can do for you that any other broker couldn’t also do. I don’t have a crystal ball.  But, because of my experience, I know how to handle probate, social security, and any other issues that might come up in the event of a tragedy.  I have helped countless people who were left floundering after a negative life event.  I promise that should anything befall you or Nita, I will prove why you chose me.”

I just had a meeting with him Wednesday afternoon and he was right.  He has been an avid blog follower and has been managing our stuff for a while.  In fact it was he that proposed I purchase life insurance outside of my employment.  He said, “You may not work there forever.”  Imagine if I had declined?

The numbers aren’t as high as they once were, because we’d been subsidizing my lost salary since last May, but he had a multi-step plan for Nita and the kids for when the time came.  He offered to stand in line with Nita at the Social Security office and help her through probate (although our wills are sound and were very generously discounted by a lawyer in my Aggie Yell group).  Parlay that with the amazing gift of a college trust offered by one of our dear friends and things are looking good financially for them.  There are two more pieces, one I cannot mention yet, but the other is the auction raffle.  We funded the wedding for Josephine and honeymoon for Connor accounts and with 20 years of growth (or more), those should turn out very nice for them.

So I came out of the meeting feeling pretty blessed.  I don’t know what my future holds and I’m sure the family would rather have me around, but I feel very much at peace knowing they will not be selling pencils or chiclets on the corner, noble a profession as those may be.  And I looked back and asked myself if I had honored my father’s words on what it takes to be a good man, good husband, and good father and I can honestly say I did okay.  I obviously made a ton of mistakes and did and said some really stupid things, but all in all, I give myself a strong B. 

I feel a little bad about baseball this year.  The commissioner keeps asking for volunteers to be head coaches, but I simply cannot commit.  I have NO idea what my travel or chemo schedule might be, or worse (we’ll get to that). I would love nothing more than to get out there and continue to teach these kids the fundamentals of baseball, being good sportsmen, good teammates, and good mechanics.  But I cannot guarantee that I’ll be available for any practice or game, much less all of them.

So here is what my dance card looks like.  On Feb 13, my buddy Lance will drive me to MDA for my EKG, anesthesia intake, and bloodwork.  On Valentine’s Day, I’ll be having the surgery.  The interventional radiology team will go up through my groin area and into my spleen.  There they will choke off a few arteries that feed the spleen to effectively kill a portion of it.  The goal is for the spleen to stop cannibalizing my platelets so they’ll rise above 100,000.  Luckily the recovery is supposed to be short but painful.  Work drugs work!  I think I’ll stay one or two days in the hospital, then they’ll release me home.  The following Monday, Feb 20, I’ll have to hump it back to MDA for bloodwork and follow up. My chauffer will be a wonderful friend from way back who I met in the political world. (I don’t have permission to use her name – will let you know if she’s okay with it). This should be a day trip, but the bloodwork will let us know if we’re over the 100K mark or not.  If that is the case, then we can start getting trials moving.  Leaving a better than average chance that I’ll be heading back to MDA the following week.

My oncology team here in Austin mercifully decided, with surgery so close, to suspend chemo until we can get a trial or see if the surgery works.  I am still feeling side effects and severe neuropathy, but nothing like it could be.  I saw a funny thing from a friend and have made mention of this before but it was referring to the fact that chemotherapy is in fact poison.  And it is.  One of the first jokes I ever heard in the oncology ward was, “if the cancer don’t kill ya the chemo will.”  And I believe it. By the way, for any of you acid reflux sufferers due to chemotherapy out there…if you still drink coffee – put honey in it.  It cuts the acidity and won’t make you gag.  You’re welcome.

Meanwhile speaking of dancing…last weekend was also the daddy-daughter dance.  Josephine’s two best friends (and a little sister) were also at the dance and we all had a wonderful time.  There was a lot more running around than dancing this year, but it was very sweet and I loved holding my sweet little princess and spinning and dipping her on the dance floor.  This I know I will miss.  I still get misty-eyed knowing that someone else will have her wedding dance in my place. I do hope that I get to watch from whichever landing spot in the beyond I may end up.

So back to sports, Connor did well enough in basketball last weekend that he earned the “MVP socks” (yes, they are clean). Tomorrow will be his last game and after we’ll have a little party.  After the party, Connor has baseball tryouts.  We’ve been doing a little practice around the house and might have a tryout simulation after school today.  Josie is just looking forward to hearing on which team she’ll be placed.  She loves the names of the teams and animals.  But as girly as that sounds, she has decided she wants to play “boy baseball” not softball.  My girl. They have both improved so much over last year. 

I’m mildly concerned about my ability to help in coach pitch.  The neuropathy in my fingers has taken a modicum of control off of my game.  I used to be a pretty pin point accuracy guy, now I’m more in a general range type of category.  I think I’ll still do fine (depending on what trial drug they give me) but we’ll have to see won’t we.  When the time comes, this is one of the things I think I will miss the most.  Watching them develop as athletes, or deciding it isn’t for them, either way.  The ride would have been nice to observe. 

I started making my top ten lists and writing birthday and anniversary letters.  I needed to go downstairs for another box of Kleenex.  Goodness, that was not easy.  But at least it will prepare me for the video so hopefully I won’t fall to pieces on that.  I hope these are received in as loving and helpful a manner as I intend them to be.  I don’t want them to be weird or spooky and it’s tough to predict what they will be up to or into, but we can all count on teenagers to be teenagers can’t we?  So those letters will hopefully resonate and maybe I’ll still have some stroke in the family to help keep the peace.

So the question on everyone’s mind.  What if?  I hear you.  What if the surgery doesn’t help? Then we take the containment drugs and run out the clock.  What if the surgery works and the trial drugs kill you?  Well that would be ironic and suck wouldn’t it?  But it is certainly a possibility.  What if the surgery works and the trial drugs cure you?  Wouldn’t that be a peach?  I would hope that I haven’t worn out my welcome and that there would be more rejoicing than those who are just reading along until the coup de gras.  The next two weeks will certainly be life changing (no pun intended – okay maybe a little) and will determine how the rest of the spring plays out. 

I’m still balancing in my mind what an acceptable time-away commitment is for this endeavor.  I haven’t found an answer yet.  Day trips I can live with for sure.  A couple of nights per month, maybe even per week are still tolerable.  But where is the fulcrum? At what point do I say, “Nope, I’d rather ride it out with my family than live at MDA as a lab gerbil on the hope that while figuring out dosages they accidentally gave me a life curing medicine?”  I do not know this answer.  I will pray for guidance and hope the answers are obvious when the time comes.

I’ve received two offers to come speak to classes.  One is a high school aged class and the other is college.  After my surgery, time permitting, I think I’ll hop on down to San Antonio and give these talks.  I still need to finish the book editing, but it is coming along nicely.  Goals and timelines certainly seem more urgent now.  I’m okay with that, I’m pretty good on a deadline.

So here we go campers. We can hope for the best, plan for the worst, or anything in between.  All I can say is that I have done my best to prepare myself, my family, and hopefully my friends for what may be coming.  I am at peace and I hope you are too.  Do not confuse satisfaction in preparation with giving up.  They are mutually exclusive.  I do not intend to give up this fight until I cannot go another round.  There are some circumstances in which the fight doesn’t make sense, but we’ll cross that bridge when we get there…but we’re planning for it anyway.  So I hope you fine folks have your wills in order, your plans are set, and may you never need them.  God bless you.  Team Marco.

It Ain't Over 'Til It's Over

It Ain’t Over ‘Til it’s Over

This problem is 50% physical and 90% mental (I wish those were the real numbers).  I could do Yogi-isms all day.  Okay, so Thursday of last week Nita and I drove to Houston to visit my oncology team at MD Anderson. Don’t hate my doctor for the same reasons I love him.  He is dry, pragmatic, and a researcher.  He pulls no punches.  We went to MDA to get tested and to go over clinical trial options.

There is some good news, some bad news, and some news.  Just remember, there is a process and we are currently in the middle of a which way book.  Do you remember those books as a kid?  You would read a couple of chapters and then choose what the characters would do or where they would go and you’d skip to another page.  Then after a few pages, do it again.  It’s kind of like that.  We have certain gates to cross through in order to qualify for other things, or we can choose not to do things and there are consequences.

We met with Dr. Kee and first the good news.  The CEA is exactly 10.0, that is awesome.  Last time we stopped chemo and only did a maintenance regimen for five weeks, it shot up to 40.  I wonder if some of those homeopathic remedies are helping? As far as options, Dr. Kee said we could still try the Oxaliplatin again if we HAD to, there is a dilution process that takes 7 hours to administer, but he saw that it did have some efficacy against the tumors.  So he doesn’t want to completely rule it out in case there are no trials or we choose other options.

Getting ready for my contrast CT scan

The tumors have grown, but just barely/marginally.  Many have no change.  There are two new but very small clusters in one of my lungs and paratracheal lymph nodes.  My spleen is large and gall bladder is distended.  Just news.  It causes some stomach/thorax pain, but nothing is spiraling out of control.  The hands and feet numbness and tingling indicate somewhat permanent nerve damage.  Nice to have, not a need to have – we can live with this discomfort.  During one of my trial interviews the Physicians Assistant said there are some neuropathy drugs they can give me if I get in a trial.

Platelets.  Mine are low.  Too low.  Apparently, I have an enlarged spleen due to the chemo and it is cannibalizing my platelets.  There is a surgical procedure called a splenic embolism where they go in through the groin and up to the spleen and cut off sections of blood flow, effectively killing 50 or so percent of your spleen. It is supposed to be extremely painful.  Plus, the spleen is a big part of your immune system.  So, after the surgery I could potentially be healthy enough to poison, and my body could recover, but the flu could put me in the ICU.

Drinking my barium cocktail in the comfy seats of MDA Mays clinic

But really, I have come too far to let a little pain make me turn back don’t you think?  So, if we can get it, we’ll push on.  Dr. Kee believes that it should only be performed at MDA.  When I spoke to Netaji he asked me to call Dr. Kee and schedule it for next week.  Talk about moving fast, we’ll see if they can do it or not.  Now I’ll be in one place for all those Houston Aggies, friends, and family to come visit me in the hospital.  I’ll keep you informed.

Thursday night after my testing we went to see Uncle Sammy and the cousins at the restaurant.  We were joined by an old college friend and the moderator of our recruiting board.  The food was great and the company was awesome.  Great seeing y'all!

Friday after we drove home from Houston, we took the kids to a hockey game.  Austin has the AAA farm team for the Dallas Stars and it was great.  Oh, the team got slaughtered, but Connor and Josephine danced and laughed and had a great time.  Connor’s streak of being the luckiest fan ever continued as he left the building with a tee-shirt that was thrown into the crowd.  We got them all sugared up and then we all slept late on Saturday.  That morning Connor had a basketball game and that was great fun.  The kids are really improving and it is awesome to see.  We went to a party later Saturday night and enjoyed our community friends and celebrated a couple of birthdays.

We went back on February 1 for interviews and more blood testing at the trial center.  Here too there is good news, news, and bad news. This is going to be clinical trial 101 so here goes.  Phase 3 trials are the most promising, have the most participants, and are just around the corner from FDA approval.  Phase 2 trials are promising, they’ve figured out the dosing, and are now comparing the results to other gold standard chemo or gene therapies. Immunotherapy is awesome…but only if you have the exact match in genetic makeup, type of tumor, type of cancer, type of mets (growth in other organs), and probably blood type.  It will work, but only on a VERY small percentage of the population. 

Phase 1 trials use small user groups, do not necessarily target any specific cancer type (although they can and sometimes try to), they have shown to be effective in animals, and in many cases, are being performed on humans for the first time.  Luckily, I’m a human so I qualify.  In truth, they are just trying to figure out the effect it has on humans and what the maximum dosages are.  Efficacy against the cancer is purely secondary.  They have a reasonable expectation that it will help (it’s hard to get grant money if you keep killing all your patients), but that isn’t the goal of the trial.  So in order to get into a phase 1 trial you have to be in that small intersection of data sets that represent people who are still healthy enough for the trial and yet have nothing left to lose (so to speak). 

For an analogy, remember the scene in Princess Bride when Wesley is being tortured by the aging machine?  The sheriff asks him to tell him exactly how it feels, “it is for posterity after all, so do be honest.”  It’s kind of like that.  The phase 1 scientists want to know exactly what side effects these drugs have in humans.  Apparently, mice, dogs, and monkeys aren’t very good communicators.  I’ll try to be smarter than a monkey when giving my feedback if I ever get a trial.

Even drugs that have passed muster and are shown to be effective are still mostly temporary time buyers.  Pay attention the next time you see those commercials come up for liver cancer, lung cancer etc.  The fine print will say something like, “This drug has shown to give the patient up to four more months of life than other drugs in this category” or something like that. So we’re purchasing months not years.  BARRING a miracle, which I know many of you are still counting on, this will be similar.  Don’t give up, and I won’t either.

My options and recommendations are as follows.  Change drug protocol to Stivarga, but lower dose so it doesn’t continue to kill off platelets (chemo kills them too – ironically). This is a containment strategy as we all knew, and Dr. Netaji isn’t a big fan because he hasn’t seen it be very effective.  But it might only need to buy us time until step two…get the spleenic embolism.  Dr. Netaji or Kee will have to order this procedure and it’s done through interventional radiology.  Two or three days in the hospital is the standard.

But if we take this step AND my platelets come back up, AND I still look like I’m ready for a wrestling tournament there are hundreds of trials available and Dr. Pant (trials intake doctor) said he’d get me in one immediately.  He liked my attitude, sense of humor, and said “I looked great.”  Looking around MDA this last time, I kind of did.  I don’t mean that in a cruel way, but cancer beats the shit out of you.  Anyway, he said to come back to him with platelets over 100K and not looking like my organs are shutting down and he’d find the best possible match trial for me almost immediately.  So that is good news and things will move fast if we get in. Dr. Kee’s area is also having a trial specific to colorectal, so that too is an option…after my platelets hit 100.

The downside, of course, is what happens if they don’t come up?  At that point I’d be out of viable options, have a weakened immune system, and won’t qualify for trials.  This is when you go in the goal line defense and hope you have all your timeouts left. No risk no reward, right? 

Wednesday we drove to Houston, there must be some strong allergen in the air because it is driving me nuts. Probably the most annoying yet least consequential part of my problem list.  But it is worth noting that I have some chest congestion and a stuffy sinus cavity.  I have a meeting with Netaji to talk about the new temporary chemo drug (Stivarga) on Monday, but if I spike a fever or have too much chest congestion, I’m sure they’ll reschedule the surgery…I think.  Speaking of lists, I am going to create a series of top ten lists.  So maybe someday the kids can look through a little book and know my favorite songs, movies, books, sports moments, etc.  Instead of Nita or my friends having to remember the lists, they can just tell the stories they like the best.  Although there are a few stories that will probably never be told (You know who you are). Hey man, I never said I was giving up all the details.

Blue Steel - the world isn't ready for Magnum

By mid-Thursday, MDA had already called with my surgery screening questions and will call back shortly with times and dates.  Wowsers, this is moving fast.  An hour later three appointments popped up on my email.  The surgery will be on February 14, Valentine’s Day.  Nita and I did not have reservations anywhere yet, so that was okay.  Second was the anesthesia prescreen was set for…gulp today!  February 3, at 10:30.  Now I’ve already driven back and forth to Houston on Super Bowl week twice in a week.  I called them and thankfully it was a fat-finger error and they corrected the date to the 13^th.

So this is where some of you may come in.  I won’t have a hospital room on Feb 13, but I think I will on 14th and 15th.  I don’t know if they’ll discharge me exactly on the 15^th or 16^th, maybe even the 17^th.  But I’ll need a ride home for sure.  Nita needs to be with the kids and keep their routine as normal as possible. I also can’t be released solo, or to a cab.  I’m sure with all the family and friends, it’ll work out. 

Another funny thing, my being out of standard care options has a lot of medical professionals giving me “the look.”  I suppose the math is pretty serious because the intake nurse was asking me if I had any feelings of depression or suicide.  You have to have a REALLY good relationship (or establish one quickly) in order to say, “I do kind of feel like hurting myself, but I also feel like taking someone with me.”  Nita was with me, ask her…of course I said that. ;)  We also later found out that MDA has a “dudes in white coats” button in case I was serious. Note to self.

Okay, so this is where I ask you not to hate the guy for the reason I love him.  When asked the question directly Dr. Kee confirmed that he wouldn’t bet that I would be around next year at this time, but one never knows.  I appreciate that candor.  I’m not the woe is me type and I’m not about to give up, so I just want to know what I’m up against.  I’m still making end of school year plans and some early summer plans, so I’m not thinking that this thing will take off on us…but it could.

Baseball season is coming up and tryouts are just two weeks away.  This Saturday is the daddy daughter dance and even though it will be only our second one, Josie has exclaimed that it is just something that we do!  And she is so excited about it, frankly so am I.  It looks like we’ll practice some baseball, watch one last football game this season, and enjoy the weekend.  Who knows what next week will bring, things are moving pretty quickly. 

So thanks for the Hawaii trip and everything else along the way.  You are the best.  Oh, and we got our Maui photoshoot pictures back.  Thank so much to Without Regrets!  If you find yourself on the island and want a great photoshoot, please look up Mariah Milan.  She had us do some goofy stuff, but the results were fantastic and created some very touching moments. 



Whatever else may come, we'll always have Maui

So where are we now?  Well, I have made peace with everything and hopefully everyone this last year and a half, and I feel pretty good about things. I’ve had a blessed and charmed life and most of you who have known me for the long haul can attest to that.  I have the most amazing friends and support group and my family is tops. I’m going to start on those letters to the kids next week so they’ll have letters from me every year on their birthday.  I’ve got to finish my last set of edits on the book (thanks Mrs. Dew) and get that rolling.  Finally, thanks for tagging along and following my journey.  I hope we can keep this going a while longer, but just in case…I love you and God bless you.  Team Marco.

 

The Road to Hana is Paved with Good Intentions

The Road to Hana is paved with good intentions

As many of you know, my friend Ry, invited me to the Dallas game last Sunday.  It was an amazing event and my first trip to Jerrah world.   You can’t quite digest the enormity of the stadium until you show up at the wrong entrance and have to walk all the way around the outside of it to the other gate.  It was a crazy environment and a very exciting game.  Unfortunately, it ended with a heartbreaking loss in the last seconds. We also had to walk about a mile in a tornado alert while the rain came in sideways.  We hunkered down at a restaurant and waited it out.  We were back to the hotel at 10PM and I was a good boy prepping for my flight home the next morning.  Luckily and thanks to Omar, I had learned an old caddy trick.  If you put clean dry newspaper in your soaking wet shoes, they will be dry and not stinky in the morning.  Check.

When I got home I was still recovering from the game and walk.  I was able to take a quick nap on the couch when all of a sudden Nita came up to me and said, “Hey check the front door, there is a package.”  Well this turned into the infamous scavenger hunt that led to the big reveal (see video).  Apparently, my friends had gotten together and put together a trip to Hawaii to fulfill the dream of a little girl and her family.  The only downside (if you could call it that) was that I was unable to plan like normal, I usually take three days making a checklist.  So I forgot a few meds, but we made it through. I later found out they had been planning for two weeks and even got my oncology team into it.  Amazing how many people were able to keep the secret and make this dream of Josephine’s possible.  It was nothing short of miraculous and for the first time I was actually speechless. Trust me, that doesn’t happen very often.

The trip out, all in all, lasted about 15 hours, including the ride to airport, layover, and drive time.  The kids did wonderfully.  The flight out was an RJ (regional jet) so there was not a lot of room to move.  The 737 from LAX to OGG was better, it was under booked so we had several rows where we could just stretch out across three seats.  Nita and Connor took full advantage and took naps.  Josie stayed up the entire time.  On the plane, we opened the folder our friends made for us.  I was in tears with all the wonderful well wishes and the gifts and gift cards that were included in our surprise.  Between the generosity of our friends and Without Regrets, our vacation would be virtually no cost.  In fact, we used cash and gift cards for everything except our hotel charges.  There were even Starbucks cards for breakfast items and the airports.  

When we arrived in our room, my ankles were so swollen I actually had to buy compression socks.  I loaded up on water and did my best to try get the swelling down.  That combined with the forgotten meds, oy vey.  But I’ve slayed larger dragons.  In the previous million or so miles I’ve flown, I didn’t’ remember that ever being an issue.  But in the grand scheme of things, no big whoop.  Oh well, the sexy life of long haul air travel.  I’ll give some brief synopses of our events, and there were many. 

When we arrived in Hawaii, we still had about an hour drive to the resort, but what a gorgeous drive it was.  Connor spotted his first whale spouting on the drive.  We arrived just after noon Maui time, and luckily our suite was ready.  Our goal was swim, have dinner, swim, stay up as late as possible, and acclimate to the new time zone.  Well our exhaustion helped, we didn’t wake up until 6:30AM HI time the next morning.

First full day, get up, go to beach.  It turns out the giving tree didn’t stop with airfare, lodging, and car rental.  It also included gift baskets of fruit, some refill cups, and five days of cabana rental on the beach.  The cabanas came with pool/beach toys, boogie boards, sunning mats, fresh fruit and water every day.  It was awesome and thank you to whomever arranged that for us (Mixon? AM and G? E3?) Anyway, while the wife and kids headed off to the beach I drove to the store to pick up forgotten items and some kitchen supplies.  I intended to cook steaks for us one night and I had forgotten to pack swim trunks and a rash guard.  By the way, in addition to Hawaii having prices 3x what you would pay on the mainland…their sizing is just south of bullying.  I wear a large and a half, usually XL shirt.  I tried on the rash guards in Lahaina and in addition to almost separating my shoulder, apparently I’m a 2XX or 3XXXL?  WTF?  So is that supposed to make me feel like I’m getting a bargain that I’m only paying $20 per X on the shirt?  But I’m not one to complain.

Another gift was a certificate to go whale watching, this was possibly the most amazing thing I’ve ever done.  I’ve seen whales before, but never this close.   Josie and Connor continued to amaze us as well as the marine biologist on board by answering all the questions correctly and stealing the show.  Josie (remember she is six) blows everyone away by her definition of the scientific method and correctly defining hypothesis (a smart guess).  It made us feel far better that the kids missed a week of school knowing that they are sharp as tacks on reading comprehension.  So, we spot some splashes and head over.  All of a sudden three bulls and a cow come within 30 yards of the boat.  They are beating the crap out of each other (the bulls) and are bloody.  One has a bloody blowhole and is yelling at the others.  It was amazing (in the slideshow).

Then poor Josie gets sick, it was either dehydration/overheating or motion sickness.  For the last hour, I hung out in the back of the boat tending to my sweet Josephine.  But to her credit she was a trooper and gutted through it.  I had to pull some old EMT tricks (ice on the wrists) to ease her discomfort, her temperature came down and we all had ice cream after we got off the boat. BTW, if anyone is going to Maui, let me know.  We have a “frequent customer” card half filled out for the ice cream shop.

As soon as we get back to the hotel (because it’s still only 2pm) we go back to the beach.  For dinner we’re thinking sushi and believe it or not the locals all said they eat at Kobe for sushi.  Josie was never a fan before, and remember just a few hours earlier she almost blew chunks over the side of the boat, but Josie gets brave and eats a roll and some tuna sashimi. Connor devours a spicy roll, tuna sashimi, some soft shell crab, and unagi (eel).

Second day, after another fresh fruit breakfast (first day back in Austin I was actually wondering where my pineapple and mango were), I head back to the store, the kids and mom head to the beach, and we have a full beach relax day.  Connor and Josie explore coral, sea urchins, crabs, parrot fish and star fish. After a full day at the pool and beach we head over to another excursion.  Without Regrets sponsored a sunset photo session.  Nita leaked one of them and it’s on the slide show.  Our photographer said they would be ready in a couple of weeks.  But tonight, I would grill. 

The resort has six grills that are first come first served.  Now, I’m as nice a guy, I think, as they come, but being from Texas, we’re a little persnickety about our grill methods aren’t we?  So as other folks would come up and ask, “Hey, got any room on your grill?”  I would politely answer, “I have a little, but I have my veggies timed on this side, my steaks are about to go down, then my steaks need to rest for 10 minutes while the veggies finish up.  You are welcome to the open portion, but my only ask is that you don’t change the temperature or lift the lid constantly to check your stuff.  Every time you lift it adds two minutes to the cook time and throws off the timing…the most common answer was, “no thanks we’ll wait.” 

Third day, we decided we’d take the infamous road to Hana.  Our rental car lady even convinced us to upgrade to an SUV specifically for this drive.  So off we head toward Hana.  Our first stop was a quaint little town called Paia (last chance for food and gas).  The advice we were given was: if anyone wants to pass you let them and when you see a bunch of cars pulled over, stop.  That advice led us to twin falls.  We saw two cars that had been burned as in set on fire and plenty of signs that stated that car break ins were common.  We later found out that the road to Hana is like the wild west.  If you leave your car, it’ll get stripped and set on fire.  If you don’t let the locals pass, they’ll pass anyway and throw beer bottles at your windshield. So there is that. 

Back to Twin falls.  This was a mile hike with waterfalls.  It was pretty neat.  Now my feet (more later) were dying on this hike since we took watershoes instead of sneakers…and thank goodness because the terrain was rocky, but you had to walk through some water crossings.  Josie also felt like the walk was too long, so I had to carry her for about half of it.  Connor ran off like a deer, no stopping that kid.

We then head to the next big part which we think was the black sand beach, but no one warns you about the 300 hair pin turns and single lane bridges.  During this F1 test lap, Josie gets motion sickness and pukes all over herself, poor baby.  We do an about face and head back for home.  We rest a bit and the reds head to the beach.  That night we hit Sansei for sushi.  It was really good, but honestly Kobe was just as good.  So if you find yourself out there, go to Kobe for half the price.  At the airport on the way home, I ran into Rusty Uresti (Omar’s brother).  Omar is known for his crazy driving.  We joked that anyone who has been in a car with Omar for more than 30 minutes and hasn’t gotten motion sickness is allowed to try the drive to Hana, if not, don’t do it.

Fourth day, well we had to cancel the browns so just Nita and Connor go snuba (snorkel and scuba).  A “cold” front blew in and the wind was howling.  The chop on the water told me that Josie would not enjoy the five-hour boat and snorkel tour at all after being motion sick twice in three days.  So she and I went shopping downtown while Connor and Nita hit the reef and got some amazing pictures. Another portion that was really enjoyable was our view.  I love watching waves, especially on cruise ships and our balcony almost replicated that experience…without the motion.  I hung out on our balcony for a while and just took it in.  It truly is one of the most calming things in my life. We were supposed to attend a luau, but cancelled it because we were pretty tired.  Luckily the resort property had Hula dancers (one of whom was invited to the Super Bowl of Hula) and prime rib for us to snack on for dinner.

Fifth and final day.  We get kicked out of our room at 10AM with 12 hours to kill. But Nita had booked massages and we had already packed and called down for luggage pick up.  We spent all day at the pool and beach, clean up in the spa, then headed downtown for one final small shopping excursion.  We ate at the Cool Cat Lounge which is like Huts Hamburgers in Austin.  We then drove back to the airport and dig in for the flight home.  When you’ve been up all day, in the sun, and then your flight is delayed until 12:15am, it takes a toll.  But we made it, got to San Francisco and then ran into my good friend Rusty and his wife Madelyn in the airport.  We finally get home to Austin where another gift (car service) was waiting to bring us home.  We were all pretty spent, and it was only 3pm.  We figured we’d play it by ear as to whether the kids would go to school the next day or spend one more day getting the time zone acclimation.

Funny aside – A friend reading about my ankle swelling felt sorry for me and took it upon himself to upgrade us to first for the ride home.  HOWEVER, only two seats were available.  We couldn’t split the kids so one of us had to go.  Plus, it made sense since Josie didn’t sleep on the way out and we needed her to sleep on the way back. We looked into changing the reservation back, but it would have been another $400.00 change fee to go back to coach.  So we kept it.  Well, Nita got the better end of the deal.  It was a short haul plane with short haul first class.  The seats barely reclined, it was not like the American business class seats where you get a joystick to control the seven different options of seat position.  Second the meal was a nasty burger on a pretzel.  There was no ice cream sundae cart, no breakfast, nada.  AND, the back of the plane was half empty again.  I had arranged to switch with the reds with our flight attendant and when I went back to go check on my sweet reds, both Connor and Nita were each spread out across three seats sleeping soundly.  Meanwhile I was contorted with Josie using my arm as a pillow.  So believe it or not, I took one for the team and stayed up front.  FYI, confirmed with other travelers, if you fly to Hawaii out of SFO or LAX…you get the short first class.  If you fly out of Dallas, you get the big boy plane with the nicer amenities.  First world problems.

Effects. I am finding that the neuropathy is getting progressively worse, especially the feet.  It’s been five full weeks since my last Oxaliplatin dose and my feet and hands still have those sensations.  I can handle the cold now, but the feeling on my feet is like numb-ish blisters running down the middle.  It is more discomfort than pain, maybe right on the edge, but it forces you to walk on the outsides of your feet to feel the ground better, which starts hurting other things.  Plus the joint pain is getting worse. My fingers are numb and weaker.  I couldn’t pull a couple of cards out of my wallet the other day because I didn’t have the tactile sensation of where to put the pressure, if that makes sense. 

My tastes are also getting really screwy.  I find myself taking Prilosec more and more frequently and have a pretty bad taste in my mouth a good portion of the time.  I try to hydrate through it, but Gatorade and pedialyte both have acidic tints to them and almost make it worse.  I was able to eat the fruit and sushi pretty well this week, so that was nice. The dry heaving is pretty constant in the morning until my anti-nausea kicks in.  It doesn’t take very long, so that is tolerable.

Additionally, it is taking longer to recover from even simple tasks.  The mile hike on rocky terrain at twin falls took a lot out of me.  An old friend sent me a blog post from another terminal patient that helped put something in perspective.  I think many responsible terminal patients weigh the opportunity costs of “fixing” oneself.  Like if you have five or six months left, why fix your knee or shoulder?  You may not even make it all the way through the rehab, so what is the point?  When I had lasik surgery 15 years ago, I was told that if I ever degrade beyond 20/30 I can get it done again for free, but is it worth it now?  In short, I am so glad that this trip happened.  I would never have spent the money for it to happen knowing what it would mean to the family later on without me having any earning power.  I am finding it harder and harder to recover, but am gutting through events for the family and experiences.  This includes daily activities and baseball etc.  I’m not asking for sympathy, just delivering the facts.

Josie needed me to carry her part of the way on the twin falls walk and I did it gladly without regard of what the cost would be.  I suppose that is part of my parting gift.  Making sure the family is able to live like normal, suffering in silence, and just showing that we can push through it.  It is what made me so proud of Josephine on the whale trip, she felt sick and gutted through it instead of demanding we turn the boat around.  My girl.

My new retirement and immersion into the family dynamic has enabled me to see things more completely and without some filters I think.  One thing that really makes me sad is a reflection I had during the trip.  We have two boys, two girls, two adults, two kids, two reds, and two browns.  And each group has a very special bond.  When I go, Josie will be devastated.  The brown vs red dynamic is really a fun and semi-competitive thing in the family and I actually wept thinking of how alone Josephine will feel without her other brown.  I know the others will miss me, and the other combinations will be alive and well.  But we really do have a very special relationship and I know it will be hard on her.  It isn’t a “she’s my favorite” or anything like that because I adore Connor for sure.  But I just wish I could apologize to her in advance for getting sick without being able to get well, but I don’t want to alarm her more than she already is.  She still wears her Team Marco wristband everywhere she goes.  But someday her other brown will be gone.  And it will be crushing I think.

Okay, here it is the full slide show, enjoy (get a drink, it’s long).  And if you didn’t see the what I hope will become the infamous reveal video, I encourage you to do it.  Here is the “Reveal” Video that our friends put together for the Hawaii trip sendoff. It is not only spectacular, it shows what an amazing group of people whom we are fortunate enough to call friends.

Thank you to all that made it possible, it was an amazing trip and it was perfect.  So we offer our sincere thanks to all who pitched in, worked on scheduling, took care of our pets, and made sure we had a wonderful time.  The memories we made will stay with us forever, much like our friendships.

So what is the message?  Funny conversation Nita and I had while Connor and Josie were diving in the coral and doing flips in the waves. She said, “I think you have more time.” I said that I hoped that she was right, but honestly, she’s the only one.  I said, “Honey, people aren’t sponsoring these trips and events for nothing.”  I wish we could come out and say it was all a mistake or we found a miracle cure – thanks for the cool experiences…guess where else we haven’t been?”  But that would be untrue. I feel my body changing more frequently now.  Thursday of this week, Nita and I will head to Houston to MD Anderson for some testing and scans.  Then on Feb 1, we’ll go back to have some clinical trial interviews.  I continue to get holistic and homeopathic recommendations and frankly we’re at the nothing to lose stage, so I’m trying many of them.

I hope the trials can add some time to the clock, but I have no regrets.  I have been shown how much my family is loved by our community.  I have seen the face of God and love in my children and wife.  I have experienced what most people never do, and I have been able to help countless people cross from being sick and lost to being sick and comforted. That makes me happy and complete.

There was a time when my ambition drove me to an unparalleled work ethic.  I wanted to be rich, successful and have everything.  I laugh a little knowing that it took a terminal disease to realize what it actually meant.  I am rich, I am successful, and I have everything.  My father always told me, “dime con quien andas, y te dijo que quien eres.”  (Tell me who your friends are and I’ll tell you who you are).  My friends, like it or not, you are my legacy.  Your choice to walk with me, guide me, and love me have actually defined both of us. 

It enabled us to capture a wonderful lesson for the children, several actually.  First, dreams can come true!  Josephine talked more than we have let on about Hawaii since we won that jackpot in Vegas a few months back.  So that one is a check.  Second, daddy always keeps his promises.  This was going to be a tough one and frankly I was going to try to convince Nita to take the kids to Hawaii after the insurance money paid out.  It would have been a “Dad would have wanted us to do this” type of thing.  But I’m glad as heck that I was able to join in the fun, create the memories, and get some pictures to look through later in their lives.  Finally, friendship.  What an amazing reference Nita will have when the kids are tweens or teens and are perhaps kicking the tires on new friendships.  She can point to the wonderful group of friends we have as an example of the type of people with whom you want to associate.  Caring, thoughtful, faithful, generous people with sincere love in their hearts.  The kind of people you are proud of and in whose accomplishments, you also take pride.

So to all of you friends, readers, prayer warriors, and folks just joining in.  Thank you for lifting this simple boy from Manchaca up.  I have received so many notes and blessings from folks along the way, I suppose it proves we did something right.  My success and wealth are my friends and family. It has nothing to do with material assets at all, how silly of me.  It only took me 47 years to learn.  So I don’t know how much time is left, but for now, I feel like the richest man alive.  God bless you all.  Team Marco.

Peaceful Transition of Power

Peaceful Transition of Power

What a wacky beginning of the year this has been.  I am officially retired and learned that I have been conveniently blaming work for not doing a bunch of chores.  I no longer have that excuse and there is a LOT to do.

Connor was a ring bearer for a Marine and his wife, he sent him this set of BDUs.

An old work colleague of mine called me up on Monday and asked, “hey, want to go to the Cowboys v. Packers game this Sunday?  I have an extra ticket.”  Well duh!  So Nita asks me to show her my itinerary and I do.  I would be flying in Sunday morning, hopping an Uber to the hotel the boys were staying in, then we’d all go to the game and I’d swing by the hotel to grab my bag and fly back home to Austin around 10PM.  Easy Peasy.

Nita then came to me and said, “I thought the game was THIS Sunday? Your tickets are for the 22^nd.”  Ruh Roh!  I immediately called American and got everything resolved.  Except now I’m staying Sunday night and flying home Monday morning.  Still pretty easy.  It’s nice being retired

It means I’ll have to push my chemo out one more day.  But that isn’t a big deal, what is one more day?  Speaking of remedies there is quite a bit of news surrounding this.  I’ve decided to try a few of the holistic approaches to see what happens.  Currently that includes, alkaline water, more green veggies, a quantum touch (remote) thing, oil, and a morning drink with turmeric.  But Marco, how will you know what works, if it works?  Who cares?  I’m not trying to cure everyone, selfishly this one is just for me so I don’t need a control for my data.  Plus we’re not sure how long the subject has.

Tuesday, I took my mom out to lunch and a movie.  It was nice, just the two of us and she really appreciated the time together.  Most often she’s helping us babysit or playing with the grand kids, so it was nice to just give her some just her and me time and answer any questions she had and maybe even wished she wouldn’t have asked.

I had two book events happen to me in the past week.  First, a good friend’s mother who has been an author and editor for over 50 years reviewed and edited my book.  In spite of her not liking sports or being religious, she was a fan.  That tells me the book might have a wider reach than I had previously thought. Additionally, she gave me some great feedback and as soon as I finish those edits, I’m going to double the book efforts.  Also, a cancer website has agreed to publish one of my blogs and list me as a guest author.  That is pretty neat and should help with some credibility.  Finally, over 4000 people read last week’s blog, the largest audience to date. 

This week, I also went to visit my head shrinker.  So I am going to lay some knowledge on you fine people.  My friend Pete has one of the great lines of all time, “Don’t hate me for the same reasons you love me.”  My therapist is not a bean bag and hug guy.  He can be, but isn’t with me.  With me he’s very matter of fact and down to business (but in a much sweeter way than I’m describing for the sake of brevity). He’s a good dude.  Anyway! I thought this session was going to be about coming to grips with my ultimate demise and should the kids be in the room or not.  Was I in for a shock?!

The theme, as you may have guessed, was the peaceful transition of power.  By that I mean, when the time comes, Nita will be 100% alone and in charge of the house.  All her decisions will be final and correct.  Currently, that is not the family dynamic.  We both share in decision making but sometimes we chirp at each other for being late, not following through, not picking up one’s shoes in the man cave (hypothetically), and other such things.  When I’m gone, there will be no more balance of power, it will be a complete dictatorship.  And I need to help that happen while I’m still here.

In other words, I need to slowly but steadily write myself out of the family script.  As painful as that was to write, it was even more painful to hear the first time.  I suppose it is obvious when you really think about it, but my retirement was intended to help me to be present and fulfil dreams, maybe cram in some big life lessons along the way.  But how does my family need me the most?  Honestly, the best gift I can give them is to help show and demonstrate Nita’s leadership and charge of the house.  Then have the children solidify their roles in the house and find confidence and leadership within themselves.  Finally to help them search for independence and see that as a positive.  Yes, I need to eliminate the sense of “We need him around to function.” 

As easy as it is to say, it won’t be easy to do.  Most of you who know me well, know I have both a big personality and a big ego.  As Nita puts it, “You take up a lot of space in the room.”  So I’ll have to learn to dial that down without stopping being who I am.  How the **** do I do that?

So I’m now inspired to add a chapter to the book called, “How to gracefully and efficiently remove yourself from the house before being removed from the planet.”  I don’t exactly know how it will go, but it will most likely start like you were taking the family to Europe for the summer and were leaving someone directions on how to manage the day to day functions of the house.  It might include:  house services (lights, lawn, cleaning), where we keep everything (not just finances), how all the remotes work and what websites to use for reprogramming, and put down schedules for car maintenance, tires, oil, etc.

Side effects this week brought nausea, joint pain, sore muscles, nose bleeds (allergy?), and some organ tightening in the abdomen (although that could be the metaphysical thing or the chores). I handled them as well as I could I suppose. 

So next week is chemo light, 5FU and Avastin.  The following week we are off to MD Anderson for testing.  Thank you Mr. and Mrs. Mixon for donating a hotel room for us.  Then on Feb 1, we go back for clinical trials interviews.  Hopefully we’ll find a study that offers time, relief, and quality of life – time with my family.

One thing my therapist and I really doubled down on was that for all intents and purposes the remission ship has sailed.  Now we’re just looking for quality of life extension.  Could there be a miracle with my trial, oil, alkaline water, quantum touch, and turmeric drink?  Absolutely.  Who knows?!  But am I pre-paying for Christmas concerts?  Not a chance.

Connor is really enjoying his basketball experience this year.  I have enjoyed him so much during this time.  It’s funny when I sit and really pay attention how much alike and how different we are.  Same with Josie.  With Connor, he loves to play, run around, and be part of the team.  He doesn’t need to be the best player or score the most (or at all).  But you can see the joy he is having by looking into his face.  Josephine must win.  She will find a way to beat you and she will win.  No idea where she gets that.

Thanks to many of you, these checks were sent to the new wedding and honeymoon funds for the kids

So here we are, not quite a fork in the road, but maybe it’s a little bumpy and less traveled. I have some new goals and challenges and I hope to handle them with as much dignity and grace as possible. I can only hope that the kids will find all of this valuable and helpful.  I hear the first five years are the hardest and I’m going to lean on several of you for different things.  I’ll reach out to you individually, and it’ll make sense when you hear the requests.   It is so funny how I spent so much time getting the financial and lesson legacy work done for my demise…but did not prepare them for the journey afterwards.  What happens after the first month? Third month? First year? 

Here is where I am supposed to come up with something witty or inspiring.  Honestly, I’m still a little shocked that I missed such a huge part of what I was trying to provide for my family.  So thank goodness there was still time.  Insert Jimmy Stewart voice again – “There’s still time!”  But during that time, I need to create a roadmap for the family and a five year plan for independence.

I’ll leave everyone with this.  As I went to pick up the kids from school Thursday a friend came over to me and said that he was taking his kids to Disney World this February.  He said that it was because of me and my blog that made him decide to do it now, “What the hell am I waiting for?”  So he’s going to do it.  I love these stories.  I also heard from a lot of my FB friends and Aggie Yell brothers how much they have changed the way they interact with their families because of the blog.  Well folks, as I fade away (someday), you’re lives will certainly be filled with other events, happenings, and things to do/read.  But please remember the lessons of being present, loving your family ferociously, and not depending on tomorrow. God bless, see you next week.  TeamMarco@austin.rr.com