The Median, the Mean, and the Mode



The median the mean and the mode

My last two oncology appointments had my mind going back to my statistics classes.  Any of you remember statistics?  The median is the dead center of the bell curve, the mean is the average of the entire distribution, and the mode is the number that comes up the most frequently.  (See this is both entertaining and educational).  If you recall the news I received last week, the new drug therapy info sheet shared that the medication had a median survival rate of 23.7 months.  What I learned in my visit to MD Anderson this week is that it is from the date of diagnosis.  So I’ve used 11 of those months.  However that is merely the median.  That means on the bell distribution, exactly half of the patients live longer and half don’t. 

So we’re going to try the drug FolFox.  This is graded as a very effective drug for my cancer and we should see some results.  The downside are the side effects.  It is very toxic.  In addition to the cornucopia of body function changes I’ve been getting, neuropathy will almost inevitably come into play.  The reason I chose to do FulFiri first is because I still wanted to coach baseball for the kids last spring.  FolFox can cause severe numbness in the hands and feet.  So severe that I may not be able to walk unassisted in four or five months…or drive (because my feet won’t have the tactile sensation to know how hard I’m pressing the gas or brake – this is the extreme).  In three months they’ll know if it is working or if the effects are wreaking too much havoc on my limbs.  Then we’ll decide the next steps.  Obviously I’m hoping we’ll pull back (modify the dosage) before it comes to not walking.  Additionally, there is a risk of permanent damage. Statistically 25% of FolFox users never regain full sensation in their hands and feet.

The next drug in line is Stivarga.  It is a pill chemotherapy that my Austin oncologist isn’t very fond of (not very effective and very expensive), but the MDA oncologist thinks it might provide some temporary stability.  The next step is clinical trials.  Here is the good news and the bad news.  The good news is there is one GI trial (Gastro Intestinal) going on at MDA but it is for folks who have a genetic disposition to colon cancer or screen MSI – high.  I am not eligible.  That means that my cancer is not genetic which is good.  Taking it a step farther, it means that my sweet Connor and Josephine are not ticking time bombs.  That makes me happy, more than you can ever know.  The bad news is there are no trials for which I am eligible at this time. 

There may be a phase 1 trial coming up in 3 months which targets colon cancer with a K-RAS mutation (which is what I have).  The upside is I am young, strong willed, and have not succumbed to the normal wear and tear of a year’s worth of chemo.  I still have an appetite (for the most part), have not lost weight, and am still strong.  That makes me a pretty good candidate (that I have proven I can take a beating).  The downside is that phase 1 testing is usually for people with nothing to lose.  The dosages are still being worked out.  There can be a high mortality rate as they try various doses to dial in the right formula.  It is designed to potentially extend the life of a few folks with a very short runway, and then once they figure out all the bugs, move on to phase 2 and 3 trials which offers more certainty of how things will work.  When I go for testing in 3 months to see how the FolFox is working, they are going to make an appointment with the phase 1 team for me. I may be running out of options.

When you ask Connor to put his underwear on after a shower

When I was a kid I read the book Flowers for Algernon (also made into a movie called Charley with Cliff Robertson).  Briefly, it’s a story about a retarded guy named Charley who worked in a science lab.  They were using experimental drugs on a mouse named Algernon.  The drugs made the mouse super smart.  So Charley wanted to take the drug.  They let him and he became brilliant.  Then about a year later the mouse died.  Charley knew that the drug that made him famous and smart would now also kill him.  But he was able to live a life he’d never dreamed existed.  Anywhoo, it just popped in my head as I was driving home from Houston thinking about the logistics of a phase 1 trial in which I may have lost sensation in my fingers and feet by the time I’m eligible.  Good times. But I too had a brilliant year, and I’m glad I did.

The night after my scan, I was at Nita’s uncle’s restaurant, Patrenellas.  I sat at the bar, ate the best pasta ever, and talked with Uncle Sammy and his son Sammy Jr.   We talked about a lot of things and Sammy Jr. told me about a friend of his who had a heart attack.  He too had cancer, but was so consumed with worry it led to his hypertension and eventual heart attack.  He actually worried himself to death.  I know how easily one can get spun up thinking about the mortality, finances, family, etc.  But you really do have to step back and calm yourself and accept your situation or it can literally kill you…sooner.  So I wonder if my attitude has taken me this far?  Have I willed myself to stay somewhat healthy?  Have all the prayers from my friends, family and support group gotten me this far?  I think yes.

I had a dream Wednesday night in which a white light came and spoke to me.  It said that I was going to be cured.  I asked the light if it was God.  The response was, “You will be cured.”  Now there is no cure for what I have.  I have been told many many times by several medical experts.  So a cure?  I’m not sure what to expect but what a miracle that would be, wouldn’t it?  And why not?

Nita was on the phone listening as my MDA oncologist and I went through the options and scores.  My CEA was up to 28 by the way.  Nita asked about overseas treatments, any and every homeopathic effort and we were given the scientific answer. We even asked about this proton therapy type of radiation a friend told me about.  They said they could possibly do it on my liver, but not my lungs which means I’d be denied.  (Why waste the therapy if you can only save half of the dying patient).  The response: twenty-three point seven months is the median.  Some have lived as long as 10 years.  Most have not.  What I can say, is I believe I have lived more in the last year than many do in 10. This past year I have sincerely paid more attention to my children, their thoughts, loves, wants, and play than maybe in the previous six…and I considered myself a pretty good dad. 

My focus on my family is a treasure that calms me when things get choppy.  I can clearly see their faces and smiles in my mind when I am alone, in bed, or in a car.  I only kind of wish the kids had enough maturity to fully understand how much I love them.  But that maturity comes with a price, as Nita can tell you.  That price is understanding the gravity of my situation.  Someday the kids will too.  But today I’m glad they are still chasing bugs, wrestling with me, and doing sneak attack tickle fights.  Let them keep and enjoy their youth.

That reminds me, I was doing a little research on cancer memoir books and I found a title that absolutely cracked me up.  I didn’t read any of the inside, so I’m not sure if it was sarcasm or not but here was the title, “Cancer is not a gift and it did not make me a better person.”  That guy is either hilarious and has a wicked sense of humor or he is the last person you want to be stuck with in an elevator.  But we are coming up on a year and I’ll probably start compiling the book before too long. 

Thursday night was the first meeting of my golf committee.  We are going to have a golf tournament benefiting the Martinez family foundation on December 4^th and 5^th.  So save the date and get ready.  There will be celebrities, a dinner, maybe a comedian, maybe a band, an auction with some amazing items, and some pretty spectacular prizes and hole in one awards. So if you can make it, mark this down on your calendar.  There will be more details in a few weeks.  But the auction and dinner will be family friendly with Santa activities galore.

I have found the key to strength and mental toughness is to always have something to fight for.  So for me, it’ll always be my family.  But for bonus points it is a golf tournament in December that I intend to both attend and participate in some capacity.  I will be there; I will be strong.  Don’t give up on me, because I will not give up, ever. TeamMarco@austin.rr.com

 

Things I learned in New Orleans

Things I learned in New Orleans

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Josie loved her souvenir mask

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

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

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

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

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

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

 

Making the death list

Making the death list

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

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

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

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

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

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

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

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

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

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

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

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

Wow what a Fourth

Wow what a Fourth

Wow what a Fourth of July weekend.  Our neighborhood does a clandestine 45 minute firework show that is about as professional as you can get.  I’m not just talking about four dudes running around with sparklers and bottle rockets. I mean 500 gram mortars and up.  This year more folks attended than ever before and it made my heart full to see several hundred people sitting on the berms with their families enjoying the show.  So often you hear about neighborhoods where nobody knows their neighbors.  Not our hood, we really do have a wonderful and supportive community.  It bleeds over into many other things as well.  When we had our food calendar after I came home from my initial surgery, we had to get a deep freezer to keep it all.  That too was donated.  It seems the whole neighborhood knows and recognizes my kids and they almost always give them a hug or a high five and ask how they are doing. Even our postman calls them by name. Again, I can’t say enough about our neighborhood. And it was nice to give something back.

My kids loved the show and I have a dog who doesn’t get spooked by thunder or fireworks, so that is lucky.  We did some obligatory poppers and sparklers in the back yard during the weekend.  It was great just watching pure innocence and joy running around the backyard without a care in the world.  Connor even found and befriended a cicada for a while.   It’s a shame how much we all took childhood for granted, continually wanting to rush to the next stage in our lives. These special moments are gone in a flash and they are so underappreciated.

Connor giving his new friend bunny ears

We went to several Independence Day parties and I got a little overheated at one. Being a native, it isn’t hard to remember that Texas is hot, shade is still hot, and there is no shame in going to sit inside for a while.  I stayed hydrated and had a white blood cell (WBC) boost shot before the weekend.  I’m sure that had a little bit to do with everything, but my counts need to come up.  Even though the Irinotecan might not be as effective on the growth as it was the last time (spoiler alert) it is still crushing my bone marrow WBC production.

Amidst all the patriotic emails and FB posts I saw one that saddened me.  Two weeks ago we spend the night on my buddy’s ranch, last week Connor was in baseball camp with another friend who went to St. Ignatius with me.  On July 2, another St. Ignatius alum succumbed to pancreatitis.  He was a bronze star decorated veteran and a good guy.  This is the second person in the last year that has had a gastrointestinal disease and has died within three years of diagnosis and treatment.

I started treatment number four of the second round Monday and my bloodwork was mostly okay but the dreaded CEA score came back as 17.4, that is a Seventeen– time to head back to MD Anderson.  I was really hoping to buy some more time with the Fulfiri in spite of how crappy it makes me feel.  But we’ll see what the experts say and recommend.  I can admit this is starting to get a bit unnerving. The doctor may even withdraw any more treatments until MDA gives another regimen…no sense in wrecking my body and making me sick if there is no positive effect towards elimination/reduction of the cancer.

I was hoping that during my last visit when the MDA doctor told me to “go ahead and travel while you still can” he was just being practical.  We booked our trip to New Orleans for next week, just Nita and I.  It was funny because Nita was totally nervous about all the things we had going on and whether or not this was the right time. Then when I told her about the CEA score she offered to skip the trip to go to Houston with me.  That night she had a dream about being alone.  The end game had set in and she was (in her dream) lying in bed alone overwhelmed with all the decisions she had to make.  All of a sudden every financial, planning, logistics, team sports, all of it was her decision and hers alone to make.  She agreed that this NOLA trip is exactly what we need.  Not that we think it will be our last trip together, but that it could be and there would be no sense in wasting it.  If I have learned anything dealing with this disease it is to do it today, tomorrow is a promise that may be hard to keep.

This is chemo week and it is shaping up to be another rough one both mentally and physically.  I sometimes feel like things are not going well physically but of course it passes with each day.  This time I feel like things aren’t going well mentally, maybe emotionally is a better word.  I’m not forgetting things, but rather I’m starting to really wonder about time and how much is left.  The combination of my scores, Nita’s dream, my own analysis of what measures/options are left, and what they all entail lead me to some unattractive conclusions.

The good news are two things: Dr. Netaji stated that he’s never seen colon cancer metastasize to the pancreas. Second, he feels that 17.4 is still “controllable” with normal gold standard medications for now and I even have a little more headway than I thought.  I’m going to find out what number is the “holy shit” number, or perhaps I don’t want to know.  I’ll keep you posted.  Turns out up to 100 is still considered within the range of treatable, not that I want to test the limit.  I also wonder what that treatment entails.  My doctor did tell me to have MDA start testing for clinical trials.

August 28 will be a full year since my diagnosis.  I was told it was terminal then, and throughout.  I knew it, believed it, but still had faith that there was more left for me to do.  I still think that, but no matter what, I can’t emphasize enough what an amazing year it has been.  I’ve never been closer to my children, friends, and my wife…well pre-kids anyway.  I had a couple of friends who were wonderful fathers die in car accidents this year.  They didn’t have a year (or more) to really focus on their relationship like I did.  What a gift.  I throw that around a lot, but I mean it.  It sounds crazy, and I hope I don’t jinx it, but I feel in my heart I’m going to die of cancer and not some freak accident.  I don’t know how I know, but I think I do.

Thursday morning my son and I were having a conversation over my morning coffee.  He said, “Dad I wish you didn’t have cancer.”  I told him that I wished so too, but to look at how much more time I’ve spent with him over the last year and how much we’ve done.  Instead of always thinking about work first, I’ve been family first and it has paid off in indescribable dividends and has been somewhat worth the financial sacrifice. He concurred and was excited about all the extra time he’d been given.  I very much believe this happened for a reason and although traumatic, the family is benefiting from my affliction.

So as mentioned previously, the end of August will put me at a full year since my initial surgery.  I’m confident I can hang on at least through football season (or of course longer).  That will give me enough time to finish a year’s worth of blogs and pitch my book to some literary agents.  My friends have offered to host a golf tournament for me in December, and we’ll have more information on that later.  I fully expect to be there, maybe even hit a few shots, so don’t worry this isn’t being promoted as a posthumous memorial tournament.  I think I mentioned this before but a few weeks ago Josie asked me to read her a Fancy Nancy book about Christmas.  In it the grandfather was late getting to the house and they were waiting for him to put the star on the tree.  As we read the story I don’t know why, but a bad feeling crept into my head and maybe a tear or two was wiped away.  It quickly subsided, but it was an emotional plea to make at least one more Christmas, another moment of weakness.   It’s hard to stay positive all the time folks, so cut me some slack. 

Apparently I’ve got some work to do both mentally and physically, but I’ll get it done.  There is no question I will do whatever it takes.  I know my body can take more and I can will myself through a lot more than I’ve been through. I will focus on the ones who make it and how.  Who knows, maybe there is a miracle out there for me waiting for just the right time?  Maybe my life already is the miracle and who am I to ask for more?  We’ll just have to fight, pray, and wait to see what is next.  This is where we separate the wheat from the chaff isn’t it?  In the Refiner’s touch, God does not see his image in me yet, so I must have more work to do.  So work I will, either way, I’m ready.  TeamMarco@austin.rr.com

Everything I need to know, I learned on a ranch

Everything I need to know, I learned on a ranch

 Isn’t it funny how many of life’s little lessons (and big ones) smack you in the face each day?  We spent the night on my friend’s ranch last weekend and I was amazed at how many things we did that I was able to turn into lessons for the kids.  When we first arrived my 40-year friend Darrell Zurovec and his lovely family met us at the gate.  It was here that my kids hopped in the back of the truck to ride to the ranch house.  Every child should ride in the back of a truck sometimes, I don’t care what they say.  The kids loved it.  I cannot thank him enough for the decades of friendship and generosity.

The "play scape"

We got to the house, put our stuff away and immediately went on a little hike.  We followed a dry creek bed and learned about watching your footing and paying attention to your surroundings so you don’t get caught in thorny plants or stickers.  We found some great areas for “critter harvesting” and named one area frog-town.  We fished a tank and hunted for fossils.  We then rounded up the horses but they were a little too skittish to saddle up and put kids on.  Sometimes animals just want to be left alone…and never approach a horse from the back.

Josie ready to ride a horse

That night after dinner we built a little fire for s’mores.  It was a scratch built fire, not a lighter fluid job.  So it was fun teaching the kids to round up and haul some rocks over to make the circle, start with kindling and stuff that will catch quickly, etc.  Finally, once we were ready to call it a night, we made sure to responsibly put the fire out.  There is nothing quite like the night sky in the country.  It is majestic. 

The next day we just explored more of the ranch and the kids took turns climbing up a tower blind (deer blind, not blind folded or lacking sight) which made the moms kind of nervous.  There was a great time had by all.  The ranch was originally settled in the 1800s and there was an original foundation for a house and a food cellar/smokehouse.  It was great to discuss with the kids (who have all the creature comforts of life) what it must have been like in the days before electricity, living off the land, preserving your food, seeking shelter, and having to use every part of an animal.  Isn’t it amazing all the things there are to do without an Ipad or TV?

The underground pantry

Climbing the tower

the old smokehouse and pantry

A big handful of daddy longlegs

One funny thing I learned was that our little dynamic of reds versus browns (hair) was not as unique as I originally thought.  Turns out there are other manifestations.  Apparently browns versus blues (eyes) is a thing too.  It was funny to watch them square off and observe which ones woke up earlier, had certain traits, etc.  I bet your families have similar splits based on funny genetic traits too. This probably helps you understand more of our internal struggles but also is kind of a bummer knowing that we are less unique than I originally thought.

Camp at the Dell Diamond

Connor attended a four day baseball camp this week.  He loved it and his group coach was a guy with whom I went to elementary and Jr. High.  He’s now a coach at Georgetown High School.  The best part was on the first day they gave each kid a pack of baseball cards.  Connor got really excited about them and asked if he could get more.  I walked him up to my office closet and said, “Son, I’ve been waiting 30 years for this conversation.”  I proceeded to show him the thousands of cards that I had been saving for decades.  Now both he and Josie are totally into it.  They have little books and sleeves, are asking about error cards, and who is a hall of famer and who is just a “regular pro.”  (You’re in there Dress).  It may be a temporary thing, but for now it’s really fun and okay I’ll say it…it’s fantastic.  Connor is now convinced he wants to be a major leaguer so he can get free gum and seeds on the bench…and a hall of famer so that kids will want his baseball card.  Either way, I get to relive the joy I had when I first started collecting too.

Nita just passed her insurance certification exam on Thursday.  We are all very proud of her as she has been studying pretty hard for it.  Now she’ll have a few more things to study, exams to take, and choices to make, in order to pick her specialty.  But this will definitely help the family.

I’m glad we got to the ranch on Saturday instead of Friday.  Last week was another rough chemo week. And I wouldn’t have been able to do half the things on Friday that we did on Saturday.  I’m able to predict and somewhat proactively medicate for the week, but you can’t completely fight the way it makes your body feel.  It’s still hard to describe but believe it or not you can taste it…and it isn’t good. 

This week was far better than last and I was able to see some customers and watch my son at his camp a little bit.  I stayed hydrated both at the ranch and at Connor’s camp finding shade whenever I could (chemo also makes you burn quickly).  So there was a lot of sunscreen involved. Monday I went in for some fluids and another blood test.  My CEA score was 14.4.  Still very high, but two points lower than last week.  So two data points doesn’t make a trend, but lower than 16 is definitely better than flat or higher.  Next week we’ll see where we are and then after chemo, we’ll measure again and if we are in single digits, then we are back in business.  If we are not, we have some decisions to consider regarding medications.

Of course this week I’ve been getting steadily razzed by friends about Johnny Manziel and his quest for one last party before he goes clean. In case you haven’t seen (or don’t care) his own father called him a drug addict and Johnny pledged sobriety on July 1.  I hope he makes it.  But it truly shows how some folks don’t properly value or understand how precious life really is.  We get one shot, that’s it.  I’m literally killing myself to get more time and steal a couple of more revolutions around the sun.  It is disappointing to see how many folks just don’t appreciate life, family, and just throw it all away. 

So why do I write about so many specific but possibly mundane activities with my kids?  Well, faithful readers, because I am hoping some of you will help me out. I don’t know how much time I have and what age my children will be when I go.  None of us do really, but stick with me (and no I’m not being defeatist).  If the math is right, and I get lucky, my kids will be 12 and 10 or younger when I am bargaining with St Peter.  How will they react?  No one knows.  They may take my lessons and messages, stay on the high road, set goals, and be awesome.  They may take it very poorly and act accordingly.  We’ve all seen it play out both ways.

This is where you come in.  I expect you to come up to them and say, “Connor or Josie, cut that shit out you knuckleheads!  We watched you grow up, followed your progress weekly, and we know for a fact your mother and father taught you better than that!  Your dad literally put a bag of poison in his chest every other week just to stick around as long as he could to help you grow and learn.  You have a responsibility to do your best, not be the best, but do your best.  You owe him that much, you owe yourself that much. So quit feeling sorry for yourself and thank God for the gifts you have and have had your entire lives! And always remember your dad is proud of you, no matter what.”  So that is why.  And you’ll have a ton of stories and experiences to cite as examples.  Or if they do in fact turn out awesome, you can just say, “I knew you’d be a bad ass, we all did.  Keep it up. Your father couldn’t be more proud of you, but then again, he’s always been proud of you…no matter what.”

My best friend just played a golf tournament in New York and qualified to play in this year’s PGA Championship.  Omar Uresti is an inspiration.  We’ve been friends for five decades now.  I’ve watched his game come and go, but he never gives up.  He never lets anyone or anything get the better of him.  Sure he has moments of doubt, but he shrugs them off and keeps going.  He helps remind me that it is never too late to make a charge and win.  So in my fight against cancer, sure it might get the better of me some days, but I will not let up I will keep grinding.  Like Omar, I know there are people watching and counting on me to keep plugging away and fight.  So that is exactly what I’ll do, one shot at time.  Happy Independence Day everyone.  May God bless you and may God bless America.  TeamMarco@austin.rr.com

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