When the going gets tough

When the going gets tough…

That was always one of my favorite scenes from the movie Animal House. Right after the fraternity of misfits was beaten up and bested by the cool kids, they decided it was time to get even.  Bluto (John Belushi) delivers his famous, “Did the Americans give up when the Germans bombed Pearl Harbor” line.  Then the gang decides how they will rise above and go get even at the parade.

Josephine does not like hunting.  We went out for a dove hunt Saturday morning and there was not enough action for her.  She was bored, did not like the kick of the .410 when she shot it, and worse got a tick while she was exploring.  The tick I think was the last straw.  When she watched me kill it with a knife and cut the head off on the gun stock, it was pretty much time to go.  So we came home early and still had most of the day in front of us.  Connor seized on Josie’s aversion to hunting and begged if we could go again this weekend.  My buddy has graciously offered us a spot on his land, this time near a corn field.

This week was a chemo week.  I do not know for the life of me how I managed to fly to Las Vegas, have perhaps four too many beverages (that one was for the doctors reading – although one should never lie to one’s doctor…in person), and stay up late on the tail end of a chemo week.  It must have been a mad combination of divine interaction and adrenaline, maybe a dash of Gentleman Jack.  In any case, this week was no fun. I am starting to get the hang of FolFox though.  It starts off fairly light on Monday.  I get my five hours of infusion and leave with my trusty pump filled with 5FU. Oh quick side note: this week I did not get Avastin.  Apparently there were traces of protein in my urine so they backed off of it.  And if you remember last week’s episode, it has a tendency to also cause hypertension (high blood pressure).  So there is that.  But thanks to the new medication, Wednesday's reading that was about as low as it had been in the last 20 years. Shockingly lower (in a good way). Echocardiogram is scheduled for next week. I can finally take care of that chemo toe today, and since no Avastin it means I won’t bleed out…so that’s nice.

So back to Monday.  I start off feeling bad but not terrible.  The only big effects are acid reflux and cold sensitivity (Prilosec and B complex). Tuesday is tricky because you can start to feel the effects increase in severity but they aren’t as bad as the FulFiri was earlier in the week.  However, the acid reflux, nausea, and neuropathy are way worse.  The former two can be controlled with meds, the cold sensitivity is tough to describe.  Initially when I was told about it, I really thought it couldn’t be as bad as they describe.  But I can tell you it is.  You literally need gloves to touch anything in the refrigerator and if you need something from the freezer?  Forget it. In fact, Monday when I came out of chemo camp it had cooled down a bit and the chill in the air made my fingers sting.  I can’t wait until winter kicks in and/or there is a mist or cold rain.  That should be fun.

The worst part is I really love this season.  I REALLY love fall and winter.  I like making fires, turning on the fire pit for s’mores.  I like taking the kids to hockey games, and just playing catch outside when it is crisp. But I like being alive a little more, so I guess you take the good with the bad.  So by Tuesday evening the effects are seriously taking hold.  Wednesday is exciting because at least by midday you’re able to get the pump removed and you can look forward to untethered sleep.  But for some reason when that last flush of saline pushes in that last bit of 5FU, it amplifies the nasty feeling in your mouth and esophagus. But at least you are free of your leash (pump) and have full mobility.

This is the different part too, Thursday’s are bad.  Way worse than the FulFiri before.  Now I don’t know if it is because of the cumulative effect, the toxicity of the FolFox, or I’m just a wimp…but Thursdays feel worse than Mondays.  Usually by 6pm it starts to subside into tolerable.  Cold sensitivity is still very heightened and I won’t be able to put ice in a drink until the weekend (2 cubes). But one can live with that.  Another funny thing is when you go to restaurants and ask for “water with no ice,” here in Texas, there is a 50-50 chance your waiter will bring you a chilled glass with cold water.  They of course are doing it to be nice, but I think I’ve sent back more water than steaks now.  Although now, unless it’s a frosted glass, I usually just wait it out and wrap a napkin around the glass.

The CEA score came back and there was a nice little dip again.  7.9!  Single digits.  I’ll be going to MD Anderson at the end of October for bloodwork and scans to check the status and see how the tumors are responding, but the scores are certainly trending in the right direction.  So much so that our little win two weeks ago is starting to manifest into trip planning.  A very nice couple who follow along and are part of my Aggie network offered vacation miles toward a property in Hawaii.  It looks pretty amazing, but nine months with my condition is a LONG long time, but it’ll be fun to plan for it anyway.  And it’s one more goal to set.

I had lunch with a buddy on Thursday and we talked a lot about goals, expectations, and ambitions.  We spoke about careers, leadership, books, etc. It was a great talk.  One of the things that came out of it was the need to feel useful.  That obviously manifests in many ways.  In fact, it can swing farther out than you might expect.  For example, what happens when you actually hit your goals? Say you set this monster target in front of you and Bam! You nail it!  Now what?  Some of us are always looking for the next challenge.  Some of us actually need that challenge. 

I think the golf tournament pulled me out of my doldrums and then a steady flow of victories in Vegas, at home, with my kids, etc. has kept the momentum rolling.  With Josephine parlaying our Vegas jackpot into a future trip, I can’t help but believe it is another nudge or log on the fire (depending on how long you’ve been reading).  Either way, it is a long term challenge for me to mentally overcome the physical beat down of the cancer and my drug side effects.  I have another purpose and a dot on my timeline.  It reads: Hawaii, Summer 2017.  I will get there!

All in all, I’m feeling pretty good about things.  The numbers are doing what they are supposed to be doing, I’m still able to tolerate the chemo and gut through the side effects, and I get to spend time with my beautiful family.  I have a lot for which to be thankful and I’m learning new things about myself all the time.  I had no idea how stubborn I was (I suppose many of you already knew it), but did it really take all of this to get through to me?  Perhaps.  In any case, I’m glad it did and that I’m able to continue to fight through it and stay on my path.  I’m also glad so many are able to learn from my mistakes.  I will continue to cherish each day, tell those whom I love that I love them, and try to be the best dad/husband/friend/son I can be.  Nobody is perfect and it has taken a lot out of me; but did the Americans give up when the Germans bombed Pearl Harbor? TeamMarco@austin.rr.com

 

One of the raffles will include this diamond

If you are going to play in the golf tournament or attend the dinner, please register, spots are filling up fast.  www.martinezfamilycancerfoundation.org

Diamonds and Hearts

Diamonds and Hearts

This was a crazy weekend and week to say the least.  Last Thursday we picked the kids up from school, kissed and hugged them, and then headed to the airport.  We hopped on our full direct flight to Las Vegas but because I almost never fly Southwest…we were in C group.  I told Nita that we had a 30% chance of sitting next to each other.  We didn’t.  As you probably know when people board a SW flight they sit aisle, window, aisle, window, etc. leaving only middle seats open.  By the time C group boards there are nothing but middles left.  No worries – Vegas baby!

Flying home, we get to sit together

We arrive to find a sharply dressed man with a sign that says, “Martinez.”  Awesome.  My buddy who flew in a day earlier had the casino host send a limo for us.  So we wait until the last bag drops and the conveyer carousel stops moving.  No bags.  So we go to the SW bag counter and they tell us that they’ll deliver our clothes/bags to the Paris hotel the next morning.  I have some nighttime meds I should take, but what is one night?  We meet our group at the hotel and I go to bed pretty early…Nita comes in a bit later and bubbly.  I know it was a great night because I find crumbs in the bathroom sink and a half eaten sandwich on the nightstand.  Nita pleads the fifth. It reminds me of college. We’ve all been there!

Notice no ice for the gentleman, but oh yes bacon!

We have a great time, stay up too late, maybe have a few too many cocktails, but none of us go too crazy.  Come on, we’re in our 40s.  On our last night we set a 4am wake up to make our 7am flight.  So after the A&M vs Auburn game, I take my winning tickets to the sports book and cash them in.  Now I’m down a few bucks at this point.  Nita doesn’t like when I play big stacks on cards, and given our current situation she’s right…but when will I be back to Vegas right?  But she also does like to play a little so she said, “Would you please make time to play some $5 three card poker with me?”  I didn’t even think they had $5 tables anymore, luckily the Paris had a few and Nita found them. 

So we take my winning $270 ticket and belly up to an open $5 table.  Nita’s betting fives and I’m betting 10 across the three bet circles.  The six card bet is considered a sucker bet with the odds very much in favor of the house, but it is fun and we were told once: if you are going to bet it; do it every time.  Don’t just do it intermittently because if you do, invariably you’ll hit a jackpot when you are not on it.  So we play all three lines.  I check my watch and notice that it’s 9pm.  I said, “Honey, let’s play for 30 more minutes and then we’re gone, remember 4AM.”  She agrees and we play for a while.  Finally, when I’m down to the last 100, I get King, Jack, Ten of diamonds.  I lean in and tell the dealer, “Here’s your chance to be a hero!”  Now I’m thinking maybe the dealer flips over two more diamonds and I get a flush at 15 – 1 for $150 bucks or a straight which is 10-1 for $100 bucks.  She flips over Ace, Queen, King.

I look at the AQ and down at my KJ10 and think, sweet!  I just hit a straight for $100 dollars.  I meet eyes with the dealer and she says, “You just won $10,000!”  Come again?!  “You just won $10,000.  I then re-look at the hand and see that her AQ were both diamonds for a Royal Flush! Holy (fill in favorite expletive)!  Nita is in utter disbelief.  They then shut down the table, go to the video, check with everyone, count the cards, presumably drive the dealer out into the desert, and all the other things they do on a jackpot.  We tip the dealer with all our remaining chips.  They also take my license and social security number.  Yep, tax forms are being prepared. I have to pay them on the spot.  I then walk to the cage to cash in my seven yellow and one pink/purple chips.  They won’t cash them until they verify with the pit boss that we did in fact win that money there.  They take my players card and run the numbers. It is a righteous win.

We finally get paid and it’s pretty exciting.  Nita wants to go drink champagne by the pool. I remind her that 4AM hasn’t changed and suggest we just get our drinks and go to the room, finish packing and go to bed.  We responsibly do that.  The next morning, we got to the airport and I spent the extra $40 dollars to upgrade our position in line. We were able to sit together on our flight home.  We drove to my mother’s house, picked up the kids and took them straight to Toys R Us.  They could each pick anything they wanted.  They chose responsible toys, everyone wins. As a side note, this came at just the right time. Our fundraising goals were a little light for the event and this win provided some cushion.  Thanks again to all who have registered at: www.martinezfamilycancerfoundation.org.

Best part of our trip!

The next morning, I went to get fluids and my blood pressure spikes.  Spikes to an unsafe level.  I’m not sure if I mentioned this, but I have high blood pressure too.  I’ve had some issues with it for a long time.  I’m not sure if there was anxiety or still riding on the adrenaline, but it would not go below 170/120.  That is very high if you are not in the know.  So they gave me a dose of clonidine and made me wait to see if it would go down…it wouldn’t.  In fact, once I focused on it…it went higher.  In fact, I started feeling my heart trying to jump out of my chest and felt my extremities start to feel clammy.  Not a good sign, but I never felt any numbness in my left arm or a tight squeeze in my chest.  No sweating, shortness of breath, or neck/jaw pain. 

As an EMT at least I knew what to anticipate in case I needed to call out for help.  So another dose and I had to promise to go see my cardiologist, whose building was around the corner.  The oncology nurses made the appointment for me.  Luckily my oncologist and my cardiologist are social friends.  So they called each other and got me into the office immediately.  The nurse checked me out and gave me some more meds to take in addition to my regular BP meds.  By 9pm it finally came down.

Wednesday I had an appointment with my cardiologist and we discovered…I’m going to be okay.  Apparently chemo is a stimulant, add in a dash of Vegas, winning a small jackpot, and you have a spike.  So he’s ordered an echocardiogram to make sure that there is no thickening of the heart walls or valves (which chemotherapy can cause). Remember the old saying, “if the cancer doesn’t kill you the chemo will.”

An interesting thing that happened while I was waiting for the doctor after my EKG test is, I remembered how many times I absolutely lost my mind thinking: about how important my time was and why was I waiting in a room with an absolute lack of productivity!  It is ridiculous.  In fact, I should take my salary, calculate the hourly portion and send the doctor’s office a bill for MY time! 

What a complete idiot I was.  Here is a team of folks dedicated to no less than keeping me healthy and alive and I was more worried about selling computers.  I suppose I was even more full of myself when I worked in the legislature.  I’m clearly over that now, but it was a funny recollection broken by the smiling calm of my cardiologist. He’s a good guy and has put up with a lot from me over the years.

Our awesome group, not exactly the rave crowd

My oncology nurse asked me an uncomfortable, but reasonable question while they were trying to control my blood pressure on Monday: Did you have too much fun in Vegas? I acknowledged that it was a reasonable question and replied, “Nope, just drinking and staying up too late.  In fact, I don’t even drink red bull or energy drinks.  I am very aware of my hypertension and don’t even mess around with those things.”  I then told Nita, “Wouldn’t it be funny if after all this and a full year of battling cancer that it’d be my ticker that took me out?”  Nita did not think it was funny. At all.  Not even a little. Okay, maybe a little.

It made me think of a funny vision.  I wonder if there is a cartoon of some guy walking out of a hospital (or MDA) and yelling, “I’m cured!” only to be hit by a cab or bus as he stepped off the curb?  I think it’s funny in a morbid sort of way.

So in addition to my regimen it looks like I need to focus on increasing my stamina.  Initially I was told to rest as much as possible because the chemo is so taxing on your body.  But I guess I can’t let my heart atrophy and get out of shape.  My cardiologist said to get some more light exercise, but don’t start cross fit or go off trying to lift any personal bests.  Another lesson to keep mind, body, and spirit all in balance.  I can do that.  Brownie!  Let’s go for a walk sweet pup.

I took some customers and friends to lunch this week.  It was fun replaying the winning hand story each time, but something funny happened.  Another epiphany occurred. I’ve truly changed my life and what I value.  As I was editing my consolidated posts from the year I stumbled across the billion-dollar lottery week.  I laughed at myself for looking at the mansions on the lake, etc.  Now, I don’t think I’d do very much.  I would definitely launch and fund the (C)(3) foundation (charity).  We’d do some home improvement work we’ve been putting off as a “luxury expense,” and we’d probably upgrade the stable (buy new cars).  That’s about it. Maybe travel a bit to create some more memories.

After we won the jackpot several folks have asked, “what are you going to do with the money?”  Well, we took the kids to each pick out a toy at Toys R Us, I bought Nita the fitbit she’d been wanting but felt was too frivolous for our current situation, and I might purchase a replacement computer for my 7-year-old Dell.  The rest went into our savings account. 

We did get one reminder from “she who never forgets anything ever! (aka Josephine).”  Do any of you remember the blog post chopped? In that episode we were discussing which chef (parent) won the pretend $10,000.  Josie made us promise that if we ever won ten grand that we’d go to Hawaii. Well that seems like a pretty easy promise to make over dinner doesn't it?  Gulp.  Daddy always keeps his promises, and if I’m still above room temperature next summer…and the tournament affords us the opportunity…I guess we’re going to Hawaii.  TeamMarco@austin.rr.com.

 

Getting by with a little help from my friends

Getting by with a little help from my friends

This weekend was filled with excitement.  First I finally had a working television on Friday night.  It wasn’t optimal since none of the others were connected (don’t get me started), but at least we had something.  Saturday morning, I took Connor to a golf clinic and we stayed until the storm hit.  We came home and Josie was devastated.  Our neighborhood allows two garage sales per year.  This was one of those days and Josie was really looking forward to setting up a lemonade stand.  I offered to put up a canopy tent and she jumped around the house screaming, “Yes dad yes!  You are the greatest dad in the world!”  She was all smiles as she sold lemonade and slices of my mother’s famous strawberry cake.  All this transpired while the Aggies took care of business. Coincidentally ESPN College Game Day ran a story about the Pitt running back James Conner who battled Hodgkin’s Lymphoma and was declared cancer free.  He even scored a pair of touchdowns.

Sunday I took Connor dove hunting at my buddy Mike’s place.  We saw one bird and shot one bird (thank goodness).  Connor was most excited about his very first shotgun.  It is a .410 single shot manual hammer.  He kept it open as instructed until it was time to shoot.  He did a pretty good job for a kid with the level of ADD he has.  He kept the bird in his vest pouch and picked up spent hulls. Since we weren’t blessed with flocks of birds flying over, at the end he was able to shoot a couple of empty shell boxes out of a tree branch.  He was all smiles on the way home.

Sunday afternoon both kids had playdates while I rested and took a nap (got a little worn out).  Later Sunday we had a swim and pizza party with some friends in the neighborhood.  I was given a compliment that I didn’t expect.  It was regarding turning the blog into a book.  The comment was that most people with my affliction are older and less inclined to talk freely about their disease, while I’m pouring it out there for the world to see.  He said it was the first time he’s ever really been able to see things fully through the eyes and heart of a cancer patient.  It made me more certain that I will pursue the book, stay tuned.  When we got home, I was completely wiped out for the weekend.  But as I told Nita, this was as good as I was going to feel at any point in the two-week routine, so why waste all this energy right?

Monday was chemo day.  It got a bit rougher as the day went on.  But I was able to get some work done knowing that this would be a short week.  A good friend turned 50 on Tuesday and we’re all going to Vegas on Thursday-Sunday.  The nurses did a great job with the tipped chemo port and hit the bullseye on the first stick.  They flipped the order of the Avastin and the Oxaliplatin. I’m not sure if there was a reason or not, but as of Tuesday afternoon I was still feeling mostly human.  Wednesday would start my slide.  The nausea was high and the diarrhea was frequent. Some guys were doing some work around the house and the paint fumes really impacted my nausea.  Thank goodness for the meds.

The pump was still uncomfortable and my mouth felt icky, and by Wednesday night, I was pleased to be free of my leash.  Note to self: bring a lot of Imodium to Vegas! Also, the hair started thinning again so it was time for another buzz cut.  The neuropathy is getting worse, but I’m taking more of the B12 to try to counteract it.  I almost dropped something pulling it out of the fridge.  It feels like you’re grabbing dry ice.  So far I’d been able to stand it long enough to grab it and put it on the counter.  This time I really did need gloves.  That kind of stinks.  I made myself a PB&J and had to use an oven mitt to hold the jelly jar.  So far it is only in my hands and fingertips, no feet yet.  Thank God for small miracles.

Monday Josephine had an issue at school with a couple of kids.  There is one little girl who isn’t adjusting as well and Josephine has a huge heart.  The counselor came to their class to suggest an exercise for kids to play with other kids who haven’t made friends yet.  Josie took this as a personal mission to play with all the kids that had no friends.  Well one little girl said something and Josie called her on it and the girl called Josie a liar.  Well in this family we take pride in our honesty and integrity. (My father used to tell me you can only sell your integrity once, after that it has no value).  Josie was mortified and in a very curt and direct voice told her, “I never lie! Martinez’ don’t lie!”  The girl was shocked at her certitude on the matter and actually got a couple of other kids to make fun of her for even making such and audacious statement.  After all, what five-year-old doesn’t lie, even a little?  Josephine, that’s who.

Josie came home and was upset about it and we had a long talk about the high road and giving second chances to those even when we don’t think deserve them.  It was a talk about forgiveness and modeling behavior.  Pretty heady stuff for a five-year-old really.  But she took it all in and said she’d try to give her another chance, but if she didn’t respond appropriately, she might not give her a third.  I told her that was fair.  But as mentioned before, there are lessons to be taught and learned everywhere aren’t there?  She’s going to be a good kid; I know it in my heart.  She already is.

Tuesday I emailed my nurse to find out the CEA score….12.8!  So if you are scoring at home, a heart palpitating score of 40 before the first treatment (of the new medication, more like the 20th treatment overall).  After the first treatment it dipped to 24.2, and most recently 12.8 after the second treatment.  Third treatment is going on now and we won’t get the new numbers for two weeks.  But I’m very excited about the trend and that is the important thing; how this is trending.  I should be getting another scan at MD Anderson in October and I won’t be foolish enough to have the same expectations that I did the last time my numbers went in either direction.  Instead I will be thankful for the way things are going. Every new day is a good day. I don’t need to score two touchdowns.

During this journey I have truly learned humility, solidified my faith, and accepted I cannot do everything by myself.  I never wanted to admit it, but I need help at times.  What I have also learned are that there are a lot of hands out there reaching to pull me out of my hole.  For them I am truly grateful.  The event we’re having is really coming along nicely.  Several more celebrities have given firm and soft commitments, the auction items coming in are amazing, and the food proposed by the caterer is going to be stellar.  My team is unbelievably talented, once we decided we were heavy on sports memorabilia and trips and light on “girl stuff” they went out and got a bunch of jewelry and art.  I certainly hope many of you can attend.  If for no other reason than for me to give you a hug and thank you for reading, praying, and sending positive vibes.  I have no doubt that all these things have helped my healing process both physically and emotionally.

I was talking to my buddy Omar on Wednesday and he told me a story about his brother’s friend.  While in college, he was shot in the back and paralyzed.  He told his mother in the hospital, “Thank God this happened to me, because none of my friends could deal with this.”  Now I don’t think for a second that my friends couldn’t deal with what I am going through, but I am certainly thankful they don’t have to.  One of us is enough.  By the way, that guy became a world class wheelchair tennis player and Paralympian. God gives us the challenges we can handle I suppose.

So short week and early blog this time.  It is probably not the smartest thing to go to Vegas on chemo week, but how can I miss Big Sexy’s 50^th birthday bash?  But I’ve also set my expectations.  I told the group that we fly in Thursday evening around 7p and I would more than likely go straight to bed while Nita no doubt would go play with the gang.  I would hopefully be fresh on Friday for two days of fun with a six AM flight back to Austin on Sunday.  That way we’d get almost a full Sunday with the kids before school.  Big thanks to our moms for staying with and taking care of the kids.

The following weekend Josie wants to go dove hunting.  Connor reluctantly is allowing her to “borrow” his new gun.  She’s got some camo, which she wore on Tuesday to school kicking off their learning “boot camp.”  It should be pretty fun, but the kids are so different.  Connor loves action.  He wants birds flying and dying.  Josie just loves being with her daddy.  So I’m sure we’ll just visit for a few hours, just the two of us having daddy daughter time probably with more hugs than shots fired, and that is really what it’s all about isn’t it? 

So over the last year I’ve grown up a lot.  My first big maturity bump was when I lost my father in 1996.  Now 20 years later, I had to face my own mortality for the next big jump.  I have new goals of living longer, seeing my kids grow up more, and being a better husband and friend to my wife.  I also want to be a better neighbor, friend, and citizen. I’m a work in progress, and I have some growing to do.  But I also know that I am not in charge of God’s plan.  In fact, I lost an old grade school friend this week.  RIP Joe. So in the meantime, I’ll just cherish every moment with those I love.  I will be the best me I can be, and maybe my words can help people find their way to find their best selves…those that want to anyway. 

So God bless y’all and may you find peace in whatever battles you are fighting.  I know a lot of you feel like you are strong enough to manage everything on your own and you probably are. But don’t be afraid to ask for a little help once in a while.  I’m sure you’ll find someone has been waiting for the invitation and it will be a growth opportunity for all of you.  So go be awesome and let someone else be awesome with you.  TeamMarco@austin.rr.com

Stands With a Fist

Stands with a fist

Today is S^2C day.  That means stand up to cancer in license plate speak.  The media has been really giving cancer a lot of attention lately.  The MLB all-star game had a stand up moment where people held up signs with names of friends or family who were battling cancer.  And of course the NFL has Pinktober just around the corner.  I think it is great that so much attention is focused on cancer.  I also think it is sad because it is obvious how much it affects us and the ones we love. As for me, I gutted through another week of no ice or cold, mixed in a root canal, and found out my port-o-catheter has shifted a tad…nothing at which to be alarmed yet, but something to keep an eye on.  They now have to stick the needle in at an angle, which we learned the hard way the first time on Thursday. It is still solidly connected with good flow and I have another side should it come to needing to install a second line.  And I can take a few sticks, no biggie.  No numbers this week, stay tuned for next week.

About 10 years ago when Nita and I were DINKs (double income no kids), and we were both doing pretty well; we discussed creating a scholarship to one of our high schools or the neighborhood school.  We used to sit and chat about an essay contest and how we would read each student’s submission then we would determine who would win our little contribution.  It made sense since writing was a big part of our lives.  Nita’s dad was a journalism major and was an editor for a very long time.  He even used to sign off his papers with -30-.  All the English teachers, majors, writers, and journalism students probably got a little chuckle.  To end the suspense and save you from googling, it means “the end.”

So then our beautiful amazing children came into our lives, Nita left her company partnership behind, and I went to a smaller company.  Our lifestyle definitely changed a bit.  I still thought that there were some big possibilities for us and had grandiose plans.  Those were interrupted by cancer and life became a lot more expensive and less flexible.  But it was still life and I was and am determined not to give in.  So this new chapter of my life has been filled with amazing new beginnings.  One of them will be the creation of a foundation that will benefit families dealing with terminal illnesses. I am proud to announce that once it is finally complete and we get some funding, our first distribution will be a scholarship for a college bound student whose life has been challenged with a parent (or sibling) dealing with a terminal illness.  As it turns out we’ll get to fulfill our vision from so many years ago. There may or may not be an essay as part of the application.

My best friend Omar is a movie fiend.  If you said, “he likes movies.” You would be understating it exponentially.  I may have mentioned that I caddied for him a few times (I know Pete is thinking, “May have mentioned…you never shut up about it”). But anyway, the normal routine was Monday check in, hit some balls, go see a movie.  Tuesday practice round then go see a movie.  Wednesday Pro-Am, go see a movie. Thursday tournament begins, if he played early and well…go see a movie.  You get the picture.  When we weren’t watching movies we were devouring Stephen King novels.

So I have a pretty large and diverse memory warehouse (get it?) of books and movies.  I have made allusions to many of them throughout the last year to try to provide a visual to capture the feeling in dealing with a particular issue.  This week has been a Dances With Wolves kind of week.  When you add in all the upsets in College football, you have a week filled with dogs prevailing (the lower ranked team in a sports contest is traditionally called the underdog or “dog” for short).  So now I’ve saved my sports fans and my English majors each a google trip.  If you remember specifically in Dances, the heroine of the story was a woman who was raised by a Sioux tribe.  Apparently as a child when her family was killed she stood defiantly with her fist in the air.  The name given to her was “Stands With a Fist (I’m not sure how the capitalization rules go for Sioux names).”

We had to break up with our television provider this week.  For three straight weeks we haven’t had any television service.  None.  We’ve been able to watch Netflix, DVDs, and DVRed shows, but no live television.  It took three weeks because the kind and more gentle Marco who is trying very hard to find unconditional positive warmth and acceptance tried to be patient, but could not forgive having zero service during week one of college football season.  Thank God for small miracles.  Those were, in no specific order, that a couple of Aggie buddies (Tony and Dennis) had an extra ticket to the UCLA game and took me with them.  I got a little overheated at the game, but found a fan to stand in front of for a while near the concession stand with TV feeds.  And with the cold/ice thing I couldn’t just knock back a big glass of iced water, or even do the ice on your wrists trick.  (By the way, it’s an old EMT trick.  If you find yourself overheating, hold some ice between your wrists. The place where you check your pulse, and it will cool you down WAY faster than drinking water or a wet rag or anything else you’ve tried; if you don’t have ice you can use a cold water bottle or beer I suppose). Anyway, we sat in the North end zone and watched the Aggies blow up the higher ranked team, then give away a 15-point lead, and finally come back and win in overtime.  It was an amazing first game and kick off to what I’m calling my “new year.”

The next night was the Texas vs. Notre Dame game.  Living in Austin it isn’t hard to find Longhorn or Irish fans.  Our friends the Hammonds hosted a kid friendly game watching party and we were able to enjoy great friends and great food…and live television (which I will never again take for granted).  That too was an amazing contest and battle of wills.  My lovely wife marched in the Longhorn band during college and enjoyed being surrounded by so many allies.  As an aside, Omar’s nephew Austin marched in his first game this weekend…as part of the Longhorn band.  The following night, our friends the Morelock’s hosted the Ole Miss vs. Florida State game.  My buddies and I had a quick dinner for Mr. Giles’ birthday, then I high tailed it over for that one.  The underdog, unfortunately, did not win this one, much to the chagrin of our host and Rebs alum.

Nita dresses up the kids for the Sunday night game, Josie refuses to "hook 'em"

So after a crazy week 1, there were quite a few upsets and near misses by highly ranked teams.  And what exactly does that mean? Some teams were grossly overrated in the beginning?  Maybe, but I’m thinking that no matter who your opponent is, you stand up and fight.  No matter how daunting the task or bleak the outlook, you stand defiantly with a fist. 

 

The sports world loves underdogs.  The literary world loves underdogs.  And there are tons of Rudy type feel good movies were tenacity overcomes talent.  So as I sat in my chair this week getting fluids, I thought about the last year.  It was quite a ride.  There were times when I felt like I was winning and times when I thought I was about done.  Not through fighting, but just out of options.  But each time something would come along and keep me moving (just keep swimming).

I credit you fine folks with a lot of it.  Of course my children keep my priorities straight, my wife keeps me grounded, and combined they fill my heart with love.  But your love, energy, prayers, thoughtfulness, and support really do make a difference.  The amazing auction item donations for my event in December is mind blowing.  The items really do accommodate any type of interest.  From art, to sports stuff, to trips, vacation homes, Jewelry, toy baskets, and so much more.  Anyway, I’m sure you all remember that last sequence in Rudy when the entire stadium is chanting his name and the coach finally motions for him to run onto the field.  The crowd erupts and the rest of his team feed off that energy.  It’s kind of like that if you can believe it.  I mean it.  When I open my email and I see new recipes for cancer killing foods, or I get letters or cards from church groups, or someone sends a text to see how I’m doing.  When I get an acknowledgment that my blog made a difference in someone’s life either in the way they spend time with their families or that they have finally decided to get a pesky or embarrassing colon issue checked out, it makes a difference. 

I was talking to quite a few people this week and I honestly think that I was put on the earth for this.  This time, this moment.  That I am supposed to go through this and endure this struggle so that others can have a better life, make healthier decisions, maybe love each other a little more, and find forgiveness a bit quicker.  Maybe most importantly to help folks truly grasp and cherish the gift of time we have been given and to use it wisely. 

We’ve all been asked to take one for the team before, well I’ll take this one for the team.  Just promise to learn from my mistakes and I promise to keep fighting.  The kids keep thinking I’m going to get better because I never let them believe it is hopeless.  And you know what, it isn’t.  Never underestimate the underdog, no matter how highly rated the opponent. I’ve still got a lot left in the tank and perhaps we’re on a mission from God.  TeamMarco@austin.rr.com

 

A Year of Thanks

A year of thanks

This Friday will be the 52^nd episode documenting my journey living with cancer.  It has had many ups and many downs.  I relived a lot of them on 8/28, the anniversary of my diagnosis, when the memories came rushing in.  I lived some of my friend’s emotional roller coaster rides when they called and shared their remembrances of the days and hours immediately surrounding my diagnosis/surgery and how the next few days would change everything. 

I think it is kind of funny and somewhat indicative of how little I appreciated the severity of my situation at the time in that my goal (and I was very vocal about it) for leaving the hospital was to get home in time to watch the A&M vs. Arizona State opener in college football.  If you go back to the very first one (and potentially the title of a book) I had to prove my colon was working after the traumatic surgery.  The proof was that I had to fart and I had to poop.  I was able to adequately deliver on both and make it home with 3 hours until kickoff. A few guys from the neighborhood and some friends came over to make me feel like it was a normal game day.  I nursed one bourbon and cheated with some brisket that Hal brought.  I was supposed to be on a low residue diet for the first month back and, well, how can you not eat bad ass BBQ on game day?

Suffice to say, even though I wanted things to appear normal they certainly weren’t; and would never be again.  As the reality of my situation slowly sank in and I adjusted to it, the changes came flowing...more like flooding.  Everything from trips to MD Anderson, where I feel like I could be a tour guide now, my port-o-catheter surgery, and of course chemotherapy would become the new normal.  But I was a pretty tough guy physically, spiritually, and mentally and I would grind through it.  Emotionally, I did my best, but hey man, only one perfect man ever walked this earth and I certainly am not he…but I pray to Him every day.

Almost 20 years ago my wife’s father died of pancreatic cancer.  Afterwards she went to see a counselor to help her sort out the torrent of thoughts and emotions.  After we got married, when we’d have those moments that all couples have, she recommended going to see a counselor.  At first I thought, “What?  Those are for nut jobs who aren’t strong enough to deal with reality.”  I have probably never been more wrong about anything…ever.  Over the years we’ve gone back when things got choppy (like in all good marriages whether we admit it or not), we’ve been back several times both together and solo when needed. 

A couple of days before we committed to launch the dinner and golf event, I found myself sinking.  I was having some thoughts that could be considered bordering on depression and I wondered if I went much deeper, could I pull myself out.  I was very concerned about my chemotherapy options running out and frankly what might be left for me.  You folks mostly saw my game face.  So I scheduled an appointment with him.

The event committee we put together is filled with rock stars in so many varied fields.  Once I started working with these folks and doing our Sunday meetings, my spirits lifted immediately.  I had purpose and drive, and a way to help both my family and the community.  I selfishly basked in the love from this group too.  The enthusiasm and support from this group of high end leaders and their willingness to sacrifice time for the cause was amazing.  You could feel it in the room.  Thanks to all the participants and volunteers.  This will be an amazing event and will launch a philanthropy that will help others with terminal illness in their families (stay tuned for more on that in the coming months).

When I sat down in the therapist’s office I was already feeling somewhat better.  He told me to remind him of all the events since our last visit, October, 2015. So as I went through them again, I was able to find those points where I was low, where I was humbled, where I felt alone, where I felt cheated, where I was lifted up, and where I was surrounded by love and support.  As I may have mentioned, he too battled colon cancer, albeit not stage 4.  But while he was in the hospital a nurse with a very holistic and homeopathic view of things dropped a bomb on him.  She said, “You know diseases attack various parts of the body which we leave open to them.  For example, fear and judgment affect the spirit level of the colon, back pain, prostate cancer, colitis, and crohn’s, etc.  Guilt feeds depression, infertility, spleen issues, and eczema.  Shame leads to ulcers, diabetes, gall bladder issues, and on and on.  But your colon cancer tells me you are a judgmental person.”

He about jumped out of his hospital bed.  He said it was a combination of enlightenment and offense and wasn’t quite sure which was stronger.  He stopped talking and stared at me.  We locked eyes and were quiet for about 15 uncomfortable seconds.  Now as a sales guy, I know this game.  First to speak loses.  But I wasn’t leading a sales presentation, I was up against a professional head shrinker.  So in the interest of time I caved.  I blurted, “I’m a judgmental person.  To a fault!”  In fact, I kind of wore it as a badge of honor.  I could size people up quickly, analyze situations and make decisions with less data than others.  I knew who I could trust and not trust, and most importantly I was the best driver on the road surrounded by idiots (even Connor and Josie started getting in on the act, so I have since (mostly) backed off my name calling and unsolicited driving tips).

He said, “When you think about it, the colon, intestines, and everything in there, deals with shit.  They take ingested materials and ‘decide’ (he made air quotes) what is good and what is not and quickly and efficiently get rid of the waste.  Isn’t that what highly judgmental people do?  Well it kind of makes of sense don’t you think?  Further, could a less judgmental Marco actually help my chemotherapy?  Was my constant judging of others and worry about the growth of my kids after I was gone, hurting my own healing?  Could I actually extend my own life by being a less judgmental dick?  Talk about a good session.

I also have two admissions to make.  In my year of finding the better Marco to friends and my children, I was not the best husband.  That will hopefully change now.  The reason, and second admission, I was judging Nita on her ability to be me when I was gone.  Now in truth, If Nita judged me with the same lens, I would fail.  MISERABLY.  So there is that.  But over the last week, I’ve been a kinder and gentler Marco.  The last thing my therapist said was that everyone can contribute to the development of children and adults alike.  It isn’t just the ones who push you.  Even though people like me remember those great teachers and coaches who got the most out of us, there are armies of people who did nothing more than live their lives but somehow still made an impression on us.

His contention was everyone contributes to your growth if you are open to it and pay attention.  His shocking example was that even Judas gave us things to think about, both positive and negative.  He said if you can receive the world with “unconditional, positive, warmth and acceptance;” your growth would be exponential.  Now, I am open to trying to be more positive, but unconditional?  How can you be a college football fan or any sports fan and be unconditionally positive and warm?  It just can’t happen.  But maybe I can help the kids in the next year understand that we all have value, and we can learn from anyone.  Like Ratatouille, “anyone can cook.”

Saturday, the kids wanted to do different things, so we split up into reds and browns and headed off to entertain them.  It had been so long since I was on the regular chemo schedule I’m glad I remembered that the Saturday and Sunday before the next round is about as good as I’m going to feel.  So we took them to a 9am golf clinic, breakfast at Jims with my mom, then Josie and I went to the mall and kiddie acres.  After golf and breakfast, Nita took Connor to the Museum at Camp Mabry and they had lunch with her mother. That night we had fun family movie night.

Monday was chemo day and yes I felt crappy, but what can you expect, FolFox really is considered the “big guns.”  The neuropathy took over quickly. I washed my hands before the water got warm and it felt like little needles on my fingertips.  Remember when you were a kid and you’d put your tongue on the terminals of a 9-volt battery to see if it had any juice?  Then you did it again to make sure? It was like that, so I stuck my hand under the water again to make sure it wasn’t psychosomatic. BUT, I felt better than I did the last chemo day.  Don’t get me wrong, I still had all the side effect greatest hits, but it somehow didn’t feel as bad…on Monday.  I was also more informed.  I overheard a nurse explaining FolFox to a new patient and telling her, “Don’t drink any iced beverages for five days.  It will feel like you swallowed bees and they are stinging your throat.” Bees! Your weapons are useless against them, save yourselves! – Tommy Boy.

Monday, chemo day, 1 year and 1 day since diagnosis.  Photo by my lovely wife Nita

By the way, my throat is feeling better and more open.  My cough is less persistent and there is no fever.  So why did I feel slightly better off than last time?  It could be that two weeks ago I was coming off of five weeks without any chemo and my body wasn’t acclimated to the deluge of poison anymore.  Or it could have been my new judgment free (mostly), kinder, gentler Marco.  Who knows?  But Nita said I was more pleasant to be around and that is what matters. 

Tuesday and Wednesday the neuropathy was setting in a bit more.  I went to my upstairs office to work and my fingers were tingling.  I don’t know if it may have been me pushing harder on the keyboard until I felt something or just getting the kinks out of the morning.  By around 9am they were feeling better, not normal, but better.  Internally, however, would the battle for comfort would rage.  It is so hard when there is so much going on inside your body and mouth to try to find a state of, well not quite comfort but less crappy.  Add in the anti-biotic and the chilled probiotic (bees) and you don’t exactly know which side effect is from what.  But it was slightly better if you can believe it.  How much of that was my getting used to it I don’t know. 

I was talking to my best friend Monday and we were joking about good days and bad days.  Good days are basically non-bad days.  I’m not sure I’ve felt great in a year…physically.  But I am told that I still look good, so I think that is a gift from God.  Not in a Fernando Llamas sort of way (You look Mahvelous), but the fact that my children get to see a healthy looking father doing stuff with them, not an emaciated old man wasting away before their eyes.  For this, I am more grateful than I can put into words.

My CEA score was 24.2, down from 40!  After one treatment.  They did my bloodwork prior to the second infusion, so all we have is one data point, not a trend...but it is a pretty exciting data point.  A second indicator was the number of hugs and high fives I received at Texas Oncology on Wednesday when my score was shared.  Third and actually great news is that MD Anderson has opened a clinical trial for my type of cancer.  So if the FolFox doesn’t continue to help (or kill) me, there is another very viable option on the board.  The downside is because it is a trial they will want every single detail measured and timed for their research.  So it is almost 99.9% chance that it will all have to be done in Houston.  However, that .1% is if we could somehow convince MDA that we could follow the protocol to the tee, cash in a few favors, get a prayer or two answered, and then just maybe I could do the trial here in Austin.  But no matter what, my runway just got a bit longer and that is fantastic news.

We’re having satellite issues at home so I popped in the Miracle DVD (the story of the 1980 USA hockey team) last night.  Also for dinner, Josie was telling a story about a girl named Callie. So of course I queued up “Going back to Cali” and she asked me to dance.  We jitterbugged and as we dipped and twirled, she asked me if I would dance with her when she got married.  I told her I would sure try.  A year ago, my friend Dr. Shaw told me to not get punched out.  Just stay in the ring until they find something.  So with the FolFox showing some efficacy, and a clinical trial as an option…who knows.  Maybe that is the secret.  Just keep fighting, stay in the ring and wait for the miracle.

This is why we play sports isn’t it?  The winning, the losing, the ups and downs.  In preparation for the game, we work and fight through exhaustion and learn how to fail.  We learn how to win graciously and we learn how to depend on our teammates. But above all, we learn not to give up.  We also learn that victories stacked in neat little piles do not make us immune to defeat.  This year has tested all my years of going through victories and losses.  It makes me wonder if God hadn’t put all those tests in front of me over the last 40 years to prepare me for this one big exam. 

So I feel like scrooge after his third visit with the ghosts.  A new beginning of sorts which dovetails nicely with the new school year, a new football season, and holidays aplenty coming up.  Even though the fall is when things in nature start to go dormant, I see newness and fresh starts.  There is so much left to do and I plan on doing a lot of it.  I’m going to the A&M v UCLA game this weekend (thanks Tony and Dennis).  Josie is going to start gymnastics and Connor will probably start wrestling this fall as well as get started on his first communion classes. 

Right now in this moment I feel very much alive and part of the world, and I intend to stay part of it for as long as I can.  So I will embrace the joy, try not to judge (as much), and give that “unconditional positive acceptance” a shot.  Who knows? It just might work, one never knows from what angle that miracle will come.  (Funny thought, I could have misspelled “angle/angel” and the sentence would have still worked).  So wrapping up a full year of blogs, here is my message and hopefully mission for the next year: Go out and be awesome; live and enjoy life; savor the details; be thankful for your time here; and tell your friends and family you love them.  Be part of the world. God bless.  TeamMarco@austin.rr.com