There is a season

There is a season

Well, baseball season is over for the kids.  Each one lost a heart breaker in the playoffs by one run.  They both learned a lot and had so much fun they want to play again next year.  Mission accomplished!    [Brief aside – The kids on Connor’s team have been amazing.  Without prompting from their parents or coaches, as Connor improved they were extremely supportive.  During our last game while taking batting practice in the cage, several of the boys stopped warming up to come to watch Connor hit.  They were yelling, “Look, Connor is hitting!  Way to go Connor, you got this buddy!”  It was amazing].  One of the other coaches in Connor’s league called my coach and offered to have a practice game toward the end of the season.  Apparently my story (and Connor’s) has gotten around and everyone wanted Connor to get that hit and run the bases. So they offered to have the game and throw as many pitches as necessary for Connor to get his hit, then run the bases, and score.  I politely and appreciatively declined.

No criticism to all those wonderful internet videos of kids running for touchdowns, being carried around the bases, scoring baskets, etc. But when Connor does it, I want him to earn it.  That is the entire point of how I’m handling my disease.  You don’t take the easy way, you don’t learn as much, and you certainly don’t appreciate it as much.  Frankly, the easy way doesn’t teach you much.  There is a book I read as a child, Where the Red Fern Grows, which meant a lot to me.  In it a poor country boy saves his money and buys two coon dogs.  He promises the dogs that the first raccoon they tree, he’ll cut it down.  Of course it was the largest tree in the woods and he only had a hatchet.  His dad came to check on him the next morning and his hands were bloody. Did his father finish the job for him?  No. Was he told to just leave it alone and forget about it?  No.  His dad gave him a better axe and some gloves. 

His grandfather came by and saw what was going on and made the statement that will forever be with me.  “Every boy should have a big tree to cut down once in their lives.”  Young Billy could have given up, could have dismissed his promise…to a couple of dogs no less.  He could have gone in, had a hot meal, warm bed, etc.  But the book is about character, perseverance, love, generosity, honor, loyalty, and dedication.  In fact, I believe every father and son should read this book together to talk about all of those things above, the world might be a better place.  I almost wish we lived more in the country like where I grew up so Connor could do some real work.  Luckily (and I can hear their voices now) my cousins have some farm land and would love some free labor for a couple of months in the summer when he’s old enough.  I just may send him down.

My point, I suppose, is it wasn’t the hit itself that was the measure of success.  Connor getting a hit was not the ultimate accomplishment.  Connor working all season, trying, hoping, getting better, practicing, willing to work harder, etc.  The culmination of all his work was the event and the lesson. His tenacity and determination was the lesson. The journey is what makes you into who you are.  That is why I didn’t want to end it on a free “Make a wish” type play.  And I don’t think it is a bad thing that all those kids and teams do that for others.  I’m totally cool with it and think it is great.  But for Connor, we needed to grind through this together.  We did, and it meant so much more in my opinion.  That and challenges like it will prepare him for a real obstacle someday.  One in particular I pray he never faces.

Speaking of which, this was another rough week.  Goodness, that full bore chemo is some nasty stuff.  I am certainly glad I’m getting another week off.  The poison feeling was lingering.  The nausea and diarrhea were persistent.  The appetite was mostly gone again and I lost five pounds (don’t worry, I had them to lose). The mouth sores and metallic thrush-y feeling/taste were there.  My white blood cell counts were fine last time so there was no shot needed which meant no bone pain.  That was a plus.  I was a little more tired than normal, but by the end of the week the energy was back.  Just in time for the work needed to get done on Wednesday and Thursday.  We grind through and stay positive, good days eventually show up, and I certainly enjoy them more than I used to.

This was the last week of pre-kindergarten for Josephine.  We attended her Spring Sing concerts for the last time.  The teachers and administrators have been wonderful at Hope Children’s Center.  They have gone absolutely above and beyond for both of our children and our family.  They continually validate our choice of a faith based preschool curriculum.  One of Josie’s teachers gave me a very sweet compliment.  As we finished and took the last pictures with them she leaned over and said, “You are so strong.  I don’t know how you do it, but your kids come to school with a smile on their face and a great attitude every day.”  You really can’t ask for a better measure than that can you?  So we must be doing something right.

We really have been blessed with the choices we’ve made over the years.  Our friends, community, neighborhood, everyone.  It has been an absolute joy and a touching reminder of the impact we all have on each other.  I think we take our interactions with people for granted, but we shouldn’t.  I get a card from a church in Houston every week.  I don’t even know who the member is.  All I know is I get a card telling me that they pray for me every day, with about 10-15 families signatures.  And it comes every week like clockwork, and has since September.  They have never met me, nor I them, and it means a lot to me.  In fact, if you are reading this and you are responsible, thank you.  It helps more than you know. My father always taught me that charity combined with anonymity is the highest level of charity (stay tuned for a Christmas story in coming weeks).

I had a discussion with someone the other day and we were talking about an issue.  He said that it didn’t matter and I countered with “everything is a contest.  Everything we do is being watched by little eyes and is a lesson to them.  And it’s a lesson to adults if they are paying attention.  We are basically telling them what kind of person we are with every interaction.”  He didn’t agree, and frankly I didn’t care.  That’s the beauty of being an American.  You believe what you want, and I’ll do the same and raise my family accordingly.  No child was ever scolded for being too polite.

While we were getting ready for our vacation and putting away the baseball gear, Nita said, “I hope this comes out right, but I really hope you are able to coach baseball again next year.  You have no idea from the outside looking in how much all of you grew, and how much closer the kids grew to you this season. Your involvement, their excitement and obvious love of the game was palpable.”  It came out right.  I did love it.  I loved helping all the kids and starting the life lessons that will pay off 20 years from now.  I mean that, if they stick with it or continue to get coaches who believe that there is a purpose to the drills and the game, the lessons are there.  Knowing what to do (situational awareness), backing up the throw (anticipation/friendship/leadership), looking for your coaches instead of watching the ball (mentoring/looking for direction/knowing your role in chaos).  And the fact that being a good teammate is more than being the best player.  It’s all there if you know where to look.  I sincerely hope I am able to do it again.  In fact a few nights ago Josie asked if I would please coach her teams until she was in the major leagues.  I smiled and responded that I would coach her as long as I could still help her and was able. Remember this was the girl who wanted to quit baseball after two practices!  My princess is a baller.

So I hope my blog touches people, inspires them to do more with their families and friends.  To do more in their community.  To forgive and to ask forgiveness.  To want to inspire others.  To be better parents, coaches, students, teammates, teachers…all of it.  I hope my message gives hope to those who need it, and a challenge to those who will accept it.  We may not always know, realize, or understand the impact we have on others…so we might as well be the best we can be.  Just in case, you never know who is watching. I’m trying to help my kids understand the foundational building blocks of what it takes to be good contributing members of society.  Finally, how to earn the respect of others by virtue of their character and actions.  How do you want to be remembered?  TeamMarco@austin.rr.com.

Isn't it funny how many lessons start with kid sports?

Isn’t it funny how many lessons start with kid sports?

Connor’s baseball season has been a lot like my chemotherapy and cancer battle.  We were ready (we though) in the beginning.  We worked hard through the season and then were dealt a setback.  Both of us had some fear to overcome and some adversity to battle through.  Neither of us gave up or gave in.  After watching Connor deal with his issues, I am feeling a lot better about things.  I think Connor is going to be okay.  And of course I’m going to stand in the ring and keep taking punches for as long as it takes.

Tuesday night I had to watch his game from my car behind the fence.  I had a needle in my chest and a pump with poison.  It was probably not a great idea to be around a bunch of hyper kids.  I did however get to take some pictures of Connor’s first ball in play.  He didn’t get a hit, but he put it in play and was thrown out at first giving tremendous effort.  In the end that is all we ever want from our kids isn’t it?  Perfect effort does not mean being perfect.  Give us the effort, the rest will work itself out.  Connor gave me that gift Tuesday night.

After the game I came home still reeling from the full chemotherapy treatment.  Connor came up to me with something behind his back.  I asked, “Did you get the game ball son?”  He said, “No dad, you did!”  The team decided to give me the game ball tonight.  They also gave a second ball signed by all the players.  I had no idea how much that would mean to me, but here I am weeping again typing this.  Truly the littlest things mean the most don’t they?  Thank you God.  Last year my mother found an old box of my father’s things.  One thing that stood out, and for some reason I kept in my office, was a ball from exactly 40 years ago when he coached my 7 year old team.  It was crazy that she had kept it that long and had decided to give it to me then, before all of this had transpired. I immediately ordered a trophy ball holder for mine and will proudly display them side by side.

My father's ball from 1976

Monday I pushed the chemo schedule in order to pitch Connor’s game…which was rained out.  So the game slid to Tuesday which was my new chemo day and with my CEA scores racing up the charts and a scan that showed it wasn’t a misread…it was time.  So Tuesday, I started my regimen again.  I wish I could say it was like riding a bike, but I wasn’t sure what to expect.  Did my body have enough of a break that it would feel like day one treatment chemo? Treatment five or treatment 10?  It was closer to eight I think. The benefit of hindsight and experience did help me remember to be proactive with my side effect meds.  It is definitely better to be proactive than reactive in these cases.  Although full disclosure, I did forget a few things which meant I had to suffer until those meds kicked in.

While in the office with my oncologist we discussed the recommendation tree (step by step – timing and order) from MDA.  This news wasn’t as positive, but we’ll stay positive anyway.  As it turns out the other two protocols that have become available are not as successful…and they aren’t as subsidized by insurance.  In fact, the next one on the list is a variation of what I’m taking but it is a short term protocol due to its toxicity and long term neuropathic effects. The one I’m on, again, has about a 1 year recommended cycle time (not to exceed) due to the toxicity and the long term effects on the body.  The other two new ones are pills (no pump), but they are not as effective as the first two…and they cost 12K per month.  You read that correctly.  Luckily Nita’s Avon business is starting to kick up a bit…not 12K per month, but you have to start somewhere right?



Josie's game Saturday was rained out, but they still found a way to have fun

Wednesday was slightly better than Tuesday and I was able to eat lunch and dinner.  The nausea and diarrhea are back.  By Wednesday evening and on into Thursday the thrush returned and luckily I still had some of the Constanzi’s solution in my fridge.  All the greatest hits are returning, but I’m more prepared than I was the first time around, that is for sure.  The rain came down in sheets on Thursday morning which actually helped me.  My pump was removed and was given a bag of fluids, and an extra day to recover.  Connor had a game scheduled for Thursday evening and I could use the extra day of rest to be honest.  I could have pitched, but I would have been nowhere near my best, and maybe even a hindrance.  I felt a little more tired this week, and I guess most of these things are the irinotecan kicking in. One thing for sure, I should be more thankful for the minor break in the chemo, but goodness it sure didn’t seem long enough.

I am going to stay positive.  There are slumps in every season and there are hot streaks.  We’ll see what happens over the course of the next year and perhaps there will be a new regimen I can try.  Then we’ll maybe give the pills a couple of months to see if they move the needle and finally we’ll sick Nita on MDA for clinical trials if possible.  Our insurance company wouldn’t pay for the genetic testing to see if my tumors would react favorable to the existing trials because “we had not tried the gold standard approach yet.”  That is certainly behind us.

Oh and on a positive note, it turns out the mother of one of the kids on our team is a writer.  She has offered to help point me in the right direction towards getting a book compiled and potentially published.  So that is kind of exciting.  I think we decided that it would be based on the first full year of experiences.  We still have a few more months of “data and experience collection” to go.

After having a full week to reflect on my MDA scan and blood results, I feel a lot better.  When you really think about it, my lung tumors returned to the original size from December, and my liver tumors continued to shrink.  But there was no spread or new tumor growth in either organ or to other organs, and the lymph system was clean.  Those are very positive results for a person in my condition.  Put another way, it could have been a LOT worse.  But it wasn’t, thank you prayer warriors out there.

Had dinner with an old USMC buddy and he let Connor hold his parade sword

Again, I think we still have some time here.  I just need to gut up and plow through my three days of tribulation every two weeks, recover enough to do fun stuff with the family and we’ll see what happens. I’ve mentioned it before, God has carried me (sometimes dragged me) this far, why would I feel like he’s done with me now?  I don’t.  I don’t know what the future holds, but I have today.  So we’ll just make the most of it won’t we? TeamMarco@austin.rr.com

Angels all around

Angels all around

Sorry if I freaked everyone out last week.  Truth be told, I was a little freaked out myself.  Somewhat justifiably.  This week’s column isn’t really designed to alleviate those fears, by the way, it kind of is as bad as I purported but... 

A couple of weeks ago my cousin came to visit us.  She’s a federal agent married to a federal agent and she’s pretty tough.  She also likes to distance run.  One thing she spoke about was keeping her face stoic while she ran.  Almost as if by showing pain on your face, your body will notice and start to break down instead of helping you push through and keep going.  I’m sure many of you were so used to seeing the stoic game face in my writing, and when I got the flu symptoms and my guard was down it was a little disturbing.  Welcome to the battle I’ve been fighting inside for a while in an attempt to keep everyone positive, happy, and frankly to keep the smiles on the kid’s faces.

A couple of nights ago I was putting Josie to bed and we were talking about angels.  I promised her that I would always be watching over her.  She then asked, “Even when you are not on the Earth daddy?”  “Especially then princess, especially then.”  She has always been the one who is more in tune with what is going on.  Like we’ve mentioned before, she has an old soul.

There was no chemo this week. The oncologist didn’t think it made sense due to the fact that the regimen is no longer working and since I’m going to MD Anderson for a new protocol recommendation and scans this week. It was more logical to get that new cocktail started beginning next week.  We discussed what my options were and I mentioned the other two protocols that have become available and my doctor reminded me that those are not “gold standard” protocols.  Which means they might have to be administered in Houston.  I think my Austin options are down to one, so far (I found out later that the other two options are available locally).

We ran into former Houston Oiler Dan Pastorini at Patrenellas Thursday night

My buddies Pete and Omar made the trip to Houston with me.  Originally I asked if Pete could come because I thought I’d be doing chemo this week and might need some help with the drive.  Pete read last week’s blog and we spoke about a few things and well he took the news pretty hard (and I don’t think I’m betraying any confidences here).  Omar then stepped up and volunteered to come along as well.   This is actually perfect when you consider that in essence we are starting over again (foreshadow alert).  And who was there in the hospital room with me during my initial diagnosis and pre-operation?  Omar and Pete of course. 

Connor got the game ball Monday night

My CEA score came back from this week’s blood test and it was 9.5.  I was hoping it would still be single digits and we just squeaked in under the line didn’t we (no rounding). This is a fairly nerve wracking trend especially considering that I was in the 1.5 range around Christmas time.  Maybe that was the Christmas present to my family and me.  I’m starting to look at things like gifts again.  For example, instead of having a pump and chemo on Monday, I was able to go pitch my son’s coach pitch game.  Connor is SOOOO close to getting a hit.  He had one foul out, and hit another ball down the third base line just foul.  He is not backing out at all and is really focused on getting that hit.  We have one more game on Saturday.  But what a gift that I was able to go to and participate in the penultimate game of the season.  From Monday to Thursday my CEA score leapt from 9.5 to 15.2.  More on that later.

The family has plans for a one night camping trip at a friend’s ranch next weekend.  It’s a friend that has been part of my life for almost 40 years.  The kids will love exploring the land and won’t mind the bugs as much as I will.  I’ll be just coming out of that first new drug cocktail and should be back in business.  Instead of our trip to Port A, we’re doing South Padre this year.  I have a lot of family in south Texas and I hope to visit with some of them while we’re down there.  We’re also staying in a condo next to another old baseball buddy from 20 years ago who, of course, was there in the hospital room with me before the surgery. I’m no longer putting things off.

We have felt like there was a presence in our house since we moved in.  There were times when our old dog would bark at the stairs when no one was there or in any of the upstairs rooms.  We have a light in the house that comes on by itself at times, there is no way anyone or any animal can “accidentally turn it on.”  I won’t draw the schematics of the switch location, but trust me, it can’t be done.

A little over six years ago when Connor was still learning to walk, he was coming down the stairs.  I was sitting in our formal living room watching him nervously as Nita was walking behind him.  We have a spiral staircase with hardwood steps.  Connor tripped and lunged forward.  While he was in motion, so was I.  I sprinted to the stairs hoping to minimize the damage.  As I got there Connor had just put his hands out and caught one of the steps.  His feet were two steps above him and his chin was about an inch from the corner of the step.  At 14 months I don’t know how he had the strength, dexterity, agility, or wherewithal to make this save.  I scooped him into my arms and took him to a chair to rock him. 

I nervously asked him if he was okay and he said, “She saved me daddy.”  I asked who had saved him.  He said, “The angel daddy.” [Crooked dog head look] “What?” I asked.  “The Angel, daddy, she saved me.” It isn’t like we talk about those things often, especially at his age.  How he could have off the cuff just said it was an angel is as likely as that light that sometimes turns on.  But he did.  Nita and I looked at each other in amazement and I gave him a tight tear filled hug.

So after my tumor marker scores you might be asking, “What are YOU concerned about or most afraid of?” Well, let me tell you.  Better yet, let me ask you what memories do you have from first grade?  Or from when you were five?  I know I’m doing the groundwork that needs to be done and helping them grow and build the foundation, but will I be relevant when they grow up?  I have great memories of my father with baseball and other things, but I lost him when I was 25.  I am now old enough to process the sacrifices he made and try to impart his wisdom on my own children.  If this is the endgame, will the kids look at their team picture from tee ball and toss it back in the box with no memory at all?  That I suppose is my fear.  Not a desire to be immortalized, just not forgotten.  I wonder if all the efforts I’m making with coaching are more for me than for them. 

I honestly don’t know the answer right now.  I suppose there is no wrong answer.  If I do get another decade, then of course this establishes the foundation of our relationship.  If I don’t, the time clearly isn’t wasted, I’m with the most important people in my world.  This escalating CEA score has my mind working overtime right now.  In fact I think the first question I’m going to ask at MDA Friday morning is, “Doc, on a scale of one to holy fu&^% sh%$, where are we?  Do I need to start doing those things I’ve been putting off?”

Took the kids to the driving range last weekend, they are begging to go back

Wednesday night I had a semi-lucid dreamish thing as I was falling asleep.  It was like I was talking to God (or maybe an angel) and he was telling me to hold my resolve and to keep my faith.  I remembered that I have felt all along that this was a test and perhaps I am not doing well on this portion of it.  So I need to refocus, stay strong, and be confident.  “Don’t give the devil an inch” I was once told.  I guess I am allowed a couple of weeks of doubt and despair, but those are over.  I need to hold fast and put on my game face for the family.  It’s time to step up my game.  I’m not the sort that slinks away from a challenge, so why start now?  It’s go time.

So here we are, about to embark on a new adventure.  I don’t know where it will take us or how long the journey will be.  What I do know is that there are angels watching over me.  They are touching various parts of my life and guiding me.  Some are in human form like my buddies who are always there for me.  Some are strangers who show up at just the right time.  Some are casual acquaintances who send me notes of encouragement.  Some let me use their condo so we don’t have exorbitant hotel bills. Some are real, and they show glimpses of themselves in the funniest ways and inspire me.  Sometimes they change my chemo schedule so I can participate in one of my children’s baseball games. And I know when I look into my children’s faces and eyes I know I see the work of God. 

The results: The results were mixed but generally positive.  The tumor marker scores are due to a doubling in size of a couple of larger tumors in my lungs.  The good news is there was no net new tumors in any other organs and my liver tumors actually improved (shrank).  So the ones that were there got bigger, but no new ones. The recommendation is to return to the original protocol. The reason is that they know it works.  It was the cocktail I was on when everything started shrinking the first time, so why not go to what we know?  It makes sense to me. Also, by going back to square one, it still leaves three more options on the table before clinical trials.

Feeling somewhat relieved I decided to ask the doctor the holy f&^%$ Sh#@ question.  He reminded me about the survival statistics and that once cancer has metastasized into other organs there is really no “getting rid of it, you can only hope to contain it for as long as you can.”  Well I decided to push my question and ask, “So with my scores I was somewhat worried that you might tell me that if there was anything I wanted to do or see, now would be the time to do it.”  He stated that although there is no immediate urgency, there is also no sense in waiting to do those things.  Basically, go do it while you are still healthy enough to do them.  Time may or may not be on my side.

That really is the lesson isn’t it?  Everyone is dying, who realizes it soon enough to start living? Who has been putting off those experiences waiting for retirement?  Who is waiting until the “time is right” to do that…fill in the blank?  And worse, who is still holding a grudge or withholding forgiveness until some artificial time deadline has passed? Take it from me, I’m lucky.  I know I’m dying.  I am not holding anything back. That is my gift.

So here we are.  As I spoke to Nita and we did the MDA debrief (she was on speaker during the appointment), I said that I felt like we were correct on the inevitability of my condition, but were a little quick on the timing.  So all in all this is great news.  I feel pretty good (all things considered) and I can still participate in everything I want to do right now.  That is a blessing.  It looks like that dream discussion with God turned out to be right on.  Keep the faith, stay true, be confident, and do my best.  I know what I’m up against, I know how my body will react and I know I can take it for now.  Heaven can wait (apologies to Warren Beatty). TeamMarco@austin.rr.com.

 

What would you do for a Klondike bar

What would you do for a Klondike bar?

So first thing’s first.  The whole family has the flu.  Everyone but me tested positive.  How does that happen?  I’ve tried to be careful and all, but I still got the symptoms and eventually did develop a fever, chills, and achiness. My poor family was down for the count.  Josie is about done with it, Connor is about 1/3 into it, and Nita is about 2/3 of the way in.  We are all properly medicated now, so that should help.  I hope I feel better in time for chemo on Monday.  That is actually serious.  I have to go to MDA as well for testing regarding the CEA spike and our vacation schedule is somewhat dependent on the timing of this round.  One more time to gut up and just plow through I guess.  By the way, when I told the primary care doctor about my CEA spike he winced.  That somewhat validates some thoughts I’ve been having lately, but I need to push though.



My poor ginger with fever cheeks

 

I have gotten feedback that I should convert my blog into a book.  After the flattery wears off, I’m left with a very consistent thought: How does it end?  Most of the time when you write a book, I’m assuming that you write your outline with a clear understanding of the plot, any twists and turns, maybe an Easter egg or two and then your reveal.  Ta dah!

My problem, if you can call it that, is the ending.  If I do publish I hope it isn't posthumous.  Advice I’ve received includes writing it how I want it to end.  But that somehow seems insincere and somewhat fictional.  Don’t get me wrong I don’t mind using embellishment to turn a good tale into a great tale.  But this seems bigger now, and I really want to stay true all the way through. So I started consolidating the blogs into one long document.  I also started cleaning up some of the early grammatical mistakes and word usage issues.  And of course this included reliving some of them again.  There were definitely a few good days and bad days.

One blog from January was about getting ill and spiking a fever after New Year’s Eve (I don’t know if this was coincidence, irony, or foreshadowing).  The next blog post was about some of the holistic and homeopathic options that were being sent to me.  My philosophy at the time was, anything to buy one more day with my family.  And I could be somewhat arrogant about it because my chemo protocol was working.  Very much an “easy for you to say” type of thing.  So here we are, the chemo is not working with the same efficacy as before.  I still have some options of course and there is the scan next week, but I really started thinking.  Would I do anything for another day? 



Lunch with some old high school buddies at Blacks BBQ

Last month Nita and I met with our financial advisor.  It was both a routine look at our retirement plan, but also an opportunity for me to outline milestones for Nita and the kids.  We’ve already started depleting our savings a bit because, well, chemo is expensive.  I have a life insurance policy that thank God we purchased well before I got sick with anything, and now obviously no insurance company would even consider a new policy.  So here is the rub.  Would I do anything to get better?  Physically yes.  Sting me with wasp venom, put grass in my butt, and change my diet.  I won’t like it, but these things I would be willing to tolerate.  Would I deplete all of the funds I’ve spent 20+ years accumulating for my family just to buy another week, year, month?  That somehow seems awfully irresponsible.

So I know I’ve driven a divide in the audience right now. This is not easy to write and probably not easy to read.

The warrior class completely understands what I am saying and why I am saying it.  It is why we have veterans walking around with prosthetic limbs and folded flags on mantles.  The nurturer and possibly the caregiver want to exhaust all resources before letting go.  That is perfectly understandable.  These lovely people constantly yearn for lost loved ones and go on about doing anything for “one more day” with a passed loved one.  I too would love for my dad to sit in the stands at one of Connor or Josie’s baseball games. That is fine, I’m not going to argue merits of anyone’s philosophy nor go through all 16 basic personality types and how they might react.  Suffice to say, that there are a lot of different viewpoints and all, okay most, are valid.  That isn’t the point of this exercise.

My best friend really took my initial diagnosis and prognosis very hard.  He was prepared by another friend for the potentiality of them opening me up on that day back in August, seeing what they were up against, and closing with no chance to help.  That was obviously on the table as an option.  Thankfully it was not the result.  So we have gotten to this point.  I have potentially exhausted one Western option and there are three more protocols that could work for me.  The discussion point is around clinical trials.  If we get to this final step, would I be willing to go to/move to Houston to do this each week?  It depends. If my insurance covered them (although you would not believe our out of pocket medical totals for last year), and I was still gainfully employed, sure. I’d give it a go.  If it was an option that was to be self-funded where we took out a second mortgage and liquidated 401Ks and IRAs?  I doubt it.  I’d be more inclined to let my friend host a golf tournament and try the 2 week Costa Rican sweat shop, starvation, wasp venom, brain potion with asparagus and wheat grass as a last ditch effort. 

I also get that this might be coming across as extremely materialistic and embracing “worldly things.”  It isn’t.  I’m not making these decisions so my kids can each drive a Lexus to high school.  This is about keeping them in a good neighborhood with good schools and having the ability to make ends meet.  My father had to quit school and join the military.  As noble a profession as that is, I would prefer that Connor and Josie go to college and if they still want to serve, then go serve as a choice not a necessity.  I also don’t want them to quit school in order to get jobs simply to help put food on the table. 

The downside of course is the emotional toll on those left behind.  A couple of days ago my mother said to me, “Mijo, I pray every night for you.  ' God, you know my husband died in my arms.  My brother died in my arms.  Please God, don’t let my son die in my arms.'”  I honestly didn’t know how to react to that statement other than to just give her a big hug.

Let me put this another way.  I had horrible nightmare the other day where my son had his arms blown off and was essentially bleeding out. He was scared and crying and my thoughts were do I put tourniquets on his arms and try to stop the bleeding knowing there was not enough time to be effective, or do I just hold him and tell him that I love him for his last five minutes?   I mercifully woke up in tears before I had to make the decision.

So what do you do?  If it was a stranger, you probably reassure the victim and work as quickly as you can to stop the bleeding.  You do your best and hope EMS shows up in time.  But what if it was Connor?  Do you want your last moment together working on the wound or guiding them into the light with thoughts of love?  What about Connor’s perspective?  Do you want to watch someone diligently working on your body to prolong the inevitable? Or do you want comfort and reassurance that there is a heaven in those last minutes? What is best for you?  What is best for him? I wish I knew the answer.  As you can see, this has been weighing somewhat heavily on me lately. Fr. Bill, if you are reading, you might expect a call this week.

I wrote most of this earlier this week while suffering with some flu-brain.   You know when you are just not quite at your sharpest.  It showed some negativity and a modicum of doubt.  Again, a few signs of human weakness.  Be assured that my faith and mind are still strong and I will push on.  I will not ring out.

Feeling just well enough to catch the first part of my buddy's show Thursday night

So here we are.  I am still hoping and praying for the best and positive outcomes, but I have to look forward and see how this dynamic might change things like down the road.  Like any business strategy, how to I position my family for success in the future?  It certainly isn’t by removing all their resources. Then again, I suppose I’m one of the resources.  I’m no martyr and I certainly don’t want to die.  After going to see my friend perform last night, I also realized there are still a lot of things left to do and lessons to both learn and teach.  There are a lot of experiences I still want to have with my family.  I also know my kids need me and I need them.  So of course I will push on.  If down the road it means downsizing the house, selling a car, making a few other choices…maybe it is worth it if the outcome balances out.  I can only continue to pray and believe that God will not only take me on the journey I’m supposed to travel, but also give me the wisdom to know what to do when I get there.  TeamMarco@austin.rr.com