Feeling is Believing

Feeling is believing

 

This week was the first week of the new chemotherapy regimen FolFox. I felt fully informed and completely prepared for it. I went into the infusion center and had my bloodwork done and I was healthy enough for the juice.  So they started on the first of six bags.  All along the way I had been told to avoid cold food, drinks, and objects the week of infusion.  I honestly thought there would be a ramping up period or a cumulative effect of the drug.  I had no idea it would work so quickly.

Monday wasn’t too bad, cold sweats and chills and a lack of appetite. Pretty standard.  I also had that nagging pump attached again.  As an aside, it is sometimes possible to tone out the affliction when you are doing things.  Taking a shower, playing with your kids, driving to the store, etc.  When you have a pump injecting 5FU into your chest it is impossible to ignore.  It isn’t just the fact that it must be either carried or tethered at all times, it’s the sound.  Every 24 seconds you hear another little burst.  It drones out a bit when you are really busy, but when you are just trying to get to sleep, it is harder.  The bursts aren’t close enough together to completely tune out, and yet they are too close together to fall asleep in-between.

Obligatory Gondola ride in Venice - Honeymoon 2004

So you try to think happy thoughts while drifting away so your dreams aren’t filled with crappy images and annoyances. This is what I think was the best part of my five-week reprieve. The time away with my family was wonderful and it was pump free.  That will more than likely be the longest I will ever spend away from my little poison injecting companion.  This is the new normal, a two week cycle indefinitely…as long as it is working.

So back to the side effects.  The neuropathy took hold a bit quicker than I anticipated.   My mother brought me some take out Chinese food on Tuesday for lunch.  I reached into the refrigerator for some soy sauce and it felt like it was burning my fingers.  It was crazy.  I actually grabbed it a couple of times to make sure I was feeling what I thought I was feeling.  How could this be happening so quickly?  When will it subside?  I’ll let you know when I do. 

I also am already feeling some numbness in my fingertips.  It is supposed to clear up within 14 days of infusion…just in time for the next infusion.  Also another side effect is a feeling of tightening in your throat.  You know that feeling where it is difficult to swallow and it feels like it’s closing up?  Well, it is just a feeling and not actually any constriction of the throat, but it sure gives you the sensation like it is.  But it is temporary and comes and goes, so at least I can talk myself down off of that one.  The downside is I am constantly gagging.  I used to take my morning six pills all in one go, now I have to space them out in two or three shots.

Wednesday night the PTA of our school had a little get together for the kids in preparation for back to school.  It was at a skate park and I should have known that just hours after getting my pump removed I wouldn’t be quite ready for it.  But I went anyway.  It was nice to see all the familiar faces and watch the kids having fun, but I had to get a friend to drive me home (no Uber, thanks Austin!).  This is a tough drug cocktail and I’m hoping it will wear off soon. 

Thursday wasn’t much better, I was tired, achy, and the neuropathy is still intact.  Josie brought me a popsicle to break apart and it is uncanny how much cold just burns your fingertips on this drug.  Good think I can drink my bourbon neat, but I am not looking forward to squaring off with this one as it builds momentum in the cumulative effect.  In other words, it’s like fighting the same bully every two weeks knowing he’s only going to get stronger. 

But that is what you do with a bully isn’t it?  You punch back and you punch hard.  You don’t sit there and take it or the bully will come back again and again.  Now I clearly don’t expect the cancer to go find a weaker host, because this is a metaphor and that’s not how it works in the real world.  Although I wish metaphors would react the way we want them to, it would be much easier wouldn’t it?

I found out my CEA score was a nice even 40 to start the new regimen.  During the last examination, I also informed the doctor that I was feeling abdominal pain in addition to my lack of appetite (I even lost five pounds in Colorado).  He very matter-of-factly said, “those are the tumors.”  So there is that.  We’re going to hold off on the colonoscopy and the root canal because Avastin (one of the drugs) delays the healing process and inhibits clotting, and we’d have to stop that portion of the cocktail for the procedures. 

But what is the alternative?  Not as attractive that is for sure.  So we press on and do what needs to be done.  Which brings up the golf tournament and dinner.  I have a team of folks which comprise the “event committee.”  They are dear friends and extremely talented.  I am also blown away at their skills and experience in doing events such as these.  What is most touching is how much they are putting into helping and trying to make this an amazing event.  We’ve lined up some pretty cool things for it and I am shocked by the creativity and tenacity of the group.  Stay tuned for more details.  But I am certain that when the details come out, no matter how many of these events you’ve attended or planned, you will be surprised.

Another touching thing are the emails and various forms of encouragement I have been receiving.  It makes me feel like my journey is even more worthwhile.   Imagine if you were told that you had to carry a burden, but by doing so you could save or change 20, 30, 50 lives.  Maybe more.  Would you do it? 

I wasn’t actually given that choice, but I think I have embraced the challenge.  And by sharing my journey I have heard about folks getting colonoscopies, prostate exams, and checking on those nagging things that would normally have been left unattended.  Further, one of the most amazing messages I received was from a neighborhood friend.  He stated (paraphrasing) that for his entire life he’d been consumed with the end result and the accomplishment. During his life he has focused on achieving his goals and considered the accomplishment of the goal the most important thing.  This was for work, family, everything.

After following my blog, he has now realized that he had missed so much along the way.  Kind of a “stop and smell the roses” epiphany. So he’s changed his life to notice these things.  He’s changed the way he deals with his wife, his children, his friends, and family.  He believes that others have also done the same and it is impacting their family dynamic in a positive way.

I’ve gotten this feedback from several others as well.  People I’ve never met, but who read the blog and share their thoughts with me.  I am truly humbled by the love and support.  I know when you are busy it takes a lot to stop what you are doing and find the time to send a note of encouragement, share a story, or lift up prayers.  But alas it is happening and coming in droves.  Well, that sure makes cold soy sauce burning your fingers seem like a small thing doesn’t it?

Don’t get me wrong, I too was part of that lifestyle.  I looked past the smiling faces of my kids on my way to the next project.  I yelled at them to get ready because we were in a hurry to do some inane thing that in the grand scheme of things didn’t matter.  And when my wife needed me to just talk about the day or validate an idea, I ignored her needs to attend to some business email that needed to be answered at 10pm…in my mind.  I am clearly not the first to throw a stone.  But, don’t worry, there is still time.  And I have found my family is very forgiving and appreciative of the time that is restored.  I used to make a joke about learning from the experience of others.  It was, “Well, we all don’t have to get hit by the same truck do we?”

I’m not sure how much time is left for me, but I know I intend to make the most of it.  I am not losing confidence or tolerance.  I can take the effects and I can overcome the fleeting doubts.  Every time I get notes, encouraging messages, or just see the eyes of my children light up as they tell me stories it gives me strength.  A friend posed the “Love your spouse” picture challenge to my wife.  And it has been neat looking at the pictures that Nita is putting together that shows our love and journey together.  I’ve had a pretty good run, and I’m ready to keep running.  Stick with me, we’ve got more to do, and we’ll enjoy the ride all the way.  By the way, I’ve got a bully to go punch, see you next week.  TeamMarco@austin.rr.com

Gold in them thar hills

Gold in them thar hills

We had one last summer hurrah in Breckenridge, Colorado this week.  We even had a travel delay on the last leg of our trip.  Nothing too bad, just an extra hour on the tarmac, but that is a lot for small kids.  And they did great.  I remembered the last time I flew home from Denver, I had a 17-hour travel day.  If you remember a few years back it was when those tornados hit Dallas.  I was on a half loaded plane in DFW when they sounded the alarm and asked us all to go into the shelters.  I went to the admiral’s club and watched a ton of hail hit the planes at the gates.  That is when I realized that every plane had to be inspected.  Inbound flights were averted and there aren’t 200 extra 737s sitting in hangers just in case. So my 12:30pm flight to Austin ended up leaving at 11:00pm.  I was lucky because every flight in between was cancelled and only my frequent flier status got me on that standby flight. My 6:30am flight from Denver even had some snow if I remember correctly.  Anyway, this was nothing like that, the worst was Josie yelling over her own headphones, “Dad when are we going to take off?”  For all those thinking we should have splurged for the miles upgrade to first class on the way back…you were right.  But we did fine.

In Breckenridge of course we visited the obligatory gold mine and did a little panning.  Josie actually found a gold fleck. Eureka! It was pretty exciting.  We did a lot of gondola and chair lift rides to amazing heights…so much so that it was kind of hard to catch your breath at times. We also went on a rafting trip.  Here is where Connor blew me away. 

Several years ago there was a carnival incident where he literally passed out on a ride.  He got so scared that he momentarily lost consciousness (yes of course I was mortified). Since then although he tries new things, he’s never been the daredevil sort.  During the rafting trip there was a rock where you could pull over and jump into the water.  Connor watched some adults and a couple of kids jumping and decided he was doing it.  We told him about the 56-degree water temperature and he didn’t care.  This is the same boy that wouldn’t jump off a diving board until early this summer, while most of his peers were doing it years ago.  Well, he climbed up with the guide and off he went.  When I helped him out of the water his hands were freezing.  He looked me square in the eye and said, “I want to do it again.”  My boy is coming around. He jumped and Josie took pictures, it was great.

During my next oncology appointment when they ask if I’ve experienced any shortness of breath I think they’ll freak out when I say “all week!” Man, going up 12 thousand feet is no joke.  The first night we got there I could barely eat any dinner and at the grocery store I thought I might even pass out.  I continued to drink a ton of water and by the second day I was feeling much better.  I did love the temperature fluctuations from low 70s to low 50s and of course it rained a little every day.  Sometimes hard, sometimes lightly, but it always rained.  Our condo was fantastic and had no AC.  So we opened windows and enjoyed the fresh mountain air.  Connor noted the crisp smell of pine everywhere and it got us talking a lot about Christmas.

A couple of friends came to visit us the night we got there and the next day.  Jon was the emcee at my wedding and was my first account executive at Dell.  His wife is a breast cancer survivor.  We talked a lot about chemo, life, and other things.  They have a property on peak 7 and took us and the kids swimming at the indoor/outdoor pool.  It was the perfect blend of activity and slow acclimation to the oxygen levels. Jon and I used to talk every day before work when I first started at Dell.  He taught me as much about how to succeed in sales as possibly anyone ever could have.  I’ve used so much of his advice over the years to do my thing as well as train other salespeople.  And the thing is, it isn’t rocket surgery.  But that is another chapter in another book.

One day we went up to the top of peak 8 and there was the “last snow of the season” piled into a big snow/ice mountain.  The kids played on real snow for the first time, slid down makeshift paths, threw ice balls, and generally had a great time slipping and getting back up.  They asked if we could come back sometime during the snowy season.  As the guy who “always keeps his promises,” I had to dance around this one.

I love that we are creating memories and getting a lot of events and family fun on film and on paper (metaphorically).  I cherish these moments and use them as tools for teaching life lessons, learning about nature, oneself, etc.  However, I am also very cognizant of my statistics, and how much we are depending on this next chemo regimen to work and work quickly.  This isn’t about time or money right now it’s about whether or not I’ll even be around to be part of this next year or the year after.  But at least there will be records of the things we did as a family.  I even started making a funeral slide show.  I know Nita will have a lot to do when the time comes, and I kind of like making those little slideshows and videos, setting them to music, etc.  So if you have any great pictures of us, please send them along (digital would be great and save me some time). I’m sure there will be some version of it running at the dinner/auction this December.

As you can imagine I reflect a lot on my life.  I look at the stages in my life where I was all about sports, then all about work, and now all about family and community.  There were two years at Dell where I didn’t take any vacation days.  None.  I just went in, worked, and made it happen.  Of course I was single and the money was great.  It was a fun environment and it met my ambitious needs and fed my work ethic with syrupy “you can do even more” thoughts.  So I did. 

A few years later, I met and married Nita and we went to Europe for 2 weeks.  Wow, I realized that I hadn’t done anything.  I’d been on a couple of cruises with some friends and even a couple of ski trips, but felt like I hadn’t seen much.  Combine that with being executive platinum on American Airlines and a Hilton diamond member.  So here I was travelling all the time, but seeing nothing more than airplanes and hotels. Nita and I decided to start using my vacation days more wisely.  We went back to Europe a couple of times and when we finally got pregnant with Connor did a two-week cruise through the Panama Canal.

The other significant factor was we had money and plenty of it.  Thank goodness we saved a lot, but we spent a lot too.  And we did it on us.  We were pretty frugal on most things, but did not skimp when we went on vacation.  Then Nita’s company went under and she became a stay at home mom.  I was still doing okay so we were able to keep up most of our lifestyle minus the plane travel and our savings contributions were halted.  I thought this would be temporary and we’d be back to the kind of money we were used to.  Then the cancer hit and other job things that I won’t get into.  Suffice to say, we went from the top of the world (our world) to where we are now.

So where am I going with this?  Well, my life has had many stages as I’m sure most of yours have as well.  I’m glad we stocked away as much as we did because now that is what we’re using to subsidize our living expenses.  I know I won’t be retiring anymore and my life insurance policy should provide close to what we were planning to add anyway. What is sad is my father was six months away from retirement when he died.  He had planned to travel with my mother and was studying to be a docent for the Lady Bird Johnson wildflower center (that man was an amazing carpenter and had a very green thumb).  The sad part is that all his adventures would never happen…but he never missed a baseball game in which I played.  Ever.

Another funny thing that happened was telling the kids stories about my life growing up in the country and my first years out of college.  I told them stories about being too poor to afford meat.  Josie was blown away.  “You couldn’t buy steak?”  “Princess,” I said “I couldn’t afford hamburger.”  Connor wouldn’t believe such a travesty.  So as our financial situation changes it reminds me again about the many lives I’ve lived.  But I’ve managed through all of them, and have been able to enjoy all parts of my journey.  My dad always taught me that any problem that can be solved with money isn’t really a problem.  I actually think that although we aren’t poor or destitute, we’ve grown closer as a family in these times.  Maybe that is another part of the lesson I needed to learn.  My dad was always saving for a rainy day and thought he’d have more time.  I’ve learned the value of time and thank goodness for savings.

As for me, sure I’ve had some adventures.  I learned that we’re not promised a retirement or a tomorrow and eventually chose to start living in the now, even if it was a little late.  Cancer has really made me double down on this. So we are being frugal with our travel (a lot of our accommodations have been gifted and air travel has been from accumulated miles over the years), but we are getting the most out of every event.  The kids are getting the bug for it and learning so much at every turn.  When we hit the end of the runway I worry about how this dynamic will change.  So again, I’m reaching out to the network.  When the time comes, please invite Nita and the kids to go with you somewhere, they should have the means.  They will appreciate it and so will I.  They learn so much from different places and adventures and I don’t want them to be library savants like Matt Damon in Good Will Hunting.

So what do I do with questions like, “Dad can we do this again next year or worse, ‘every year?’”  I suppose I answer like any other parent and say we can try but there are no promises.  They are too young to ask why, thank goodness, because that would be quite a long answer and not a fun one. But this does give me another few reasons to keep fighting doesn’t it?  There are adventures out there and lessons to be learned.  I have found that the more well-rounded you are, the more you can talk about almost anything.  That means you can talk to almost anyone, and that makes you a value to any group whether in friendship or employment.

I’ve experienced a lot in sports, in life, in reading, and in travel.  My experience and thirst for knowledge has given me a pretty broad and deep ability to talk about many things.  I think this is why my network is so vast and diverse.  I have been able to be many things to many people, while still being myself…if that makes any sense.  However, as I think about my support network I am clearly blown away. In fact the other day I thought to myself, I certainly don’t deserve all this love and support.  I just don’t.  I have not sufficiently earned it.  I have tried to be a good friend, good teammate, good parent, good coach, good husband, good son, etc. But I know in my heart that I have failed so many times.  I have not always been that dependable friend.  I have been selfish so many times (don’t get excited, there is no big reveal coming – I have always and will always honor my marriage) and have not always taken the time to help others. 

So here I sit in awe of your generosity and love. The outpouring is beyond what I could ever imagine. I think this is why I write this blog, so I can try to help others find confidence, inspiration, health, maybe repair a broken relationship, and see the value of time.  It isn’t much, but it is what I can give right now.  I cannot express how much you all mean to me and my family.  I may not have enough time left to earn it, but I will try.  That’s all I can promise, because daddy always keeps his promises. TeamMarco@austin.rr.com

To Pump or Not to Pump

To Pump or not to Pump

It is now going on five weeks since my last infusion of chemotherapy.  My tumor marker scores are climbing, but I feel way better if that makes any sense.  This break I have been getting has really been wonderful for my energy, strength, and I think attitude.  Sure I’m nervous and concerned about what is going on.  And there are some GI things that have changed over the last few weeks…but all in all my body is bouncing back fairly well.  The only thing I wonder about is since the cancer is part of me, does it have the same resilience that my other body functions/parts do?

This weekend we took the kids to another ballgame at the Dell Diamond to watch the Round Rock Express.  I ran into my best friend and his son, some friends from the neighborhood, and even an old college baseball buddy. It was great catching up with those guys. During the game each kid ended up with a baseball.  They were both very excited, but this is a pattern that is bordering on disturbing.  The first game where we come home empty handed is probably going to be shocking.  They are probably going to look at me like I have three heads.  “Dad, WTF?  Where’s the swag?”  I’ll have to explain that for 99% of the ball park attendees, that’s how it goes.  It’s actually special when you get a ball or something else.  It should be a funny but teachable moment when it happens…or they are the luckiest kids ever and will always walk to the car with more stuff than with which they walked into the stadium.

There is a group called Wonders and Worries that helps kids adjust to parents with cancer.  They do some amazing things and have really helped Connor and Josie have a better understanding of what I’m going through, what it means, the terminology, etc.  Monday they invited us to do a river cruise to watch two million Mexican free tail bats fly out from underneath the Congress avenue bridge to go feed on 10 tons of mosquitos and other insects.  It was amazing.

 

My Best friend Omar had a birthday this week and we all went to dinner the other night.  It was great just telling old stories and making fun of each other.  I later found out that while he was playing at the PGA Championship last week, he had a flag signed by a few major winners.  He said it would be for the auction prior to the golf tournament.  It’s pretty sweet.  When we get back from our vacation, I’ll provide some more details on the tournament.  But it is shaping up nicely.

We’re taking the entire family to Breckenridge today.  The parents of one of the kids I coached this season has donated their condo to us and I had enough air miles to get us up and back for under $50.00.  So we’re off.  I went to the oncology center to have my blood tested and port flushed and to ensure I was healthy enough to fly and be around other people.  Imagine my surprise when my blood tests came back with normal platelets, white blood cells, etc.  In just a few weeks off the chemo, my system has recovered nicely.  That is pretty cool.  And it gives me a lot more confidence going into the week after next when I will get the next infusion and come home with a pump.

I’m not sure what will happen but I realize that my mind and my body can take quite a bit of punishment right now.  That helps believe it or not. 

A few weeks ago I sent out a note regarding having a Q&A.  I got a few questions back and thought I would share them with you.

Q: How did you not know you had cancer?  Were there any warning signs in retrospect?

A:  Great question and apologies for the long answer.  I worked at Dell for 15 years and it may come to no surprise that I had hypertension (high blood pressure) and ended up with a cardiologist.  He gave me some prescriptions that were intended to reduce my blood pressure, but they came with other effects which resulted in minor tweaks to my medications over a couple of years.  Additionally, I started working out more, losing weight, and changing my diet. 

Here is the weird part.  As my diet and medications changed so did my bowl movements (colon cancer, stick with me here).  I chalked the poop changes up purely to diet and changing medications.  Those changes included frequency, color, and texture.  In short about four or five loose movements per day.  My cardiologist suggested that if things didn’t get more “normal” that I should consider going to see a Gastroenterologist. But hey, I was a busy guy and didn’t have time for that…I figured I’d switch protein shakes or something.

Concurrently, I started having really bad back pain. So bad it forced me to walk out of a golf tournament on the second hole.  I could barely drive my cart home to lay down and stretch.  So I went to Austin Spine and Rehab.  They took X-rays and found that I might have a slightly inflamed disk.  So I did a ton of rehab and stretching on my back. I even got deep shock therapy in my back. It started to feel better, even to the point where I was playing golf again.

Months after the back pain started to subside and years after my GI (Gastro Intestinal) issues initially popped up I had my emergency event with the blockage.  Once the CT scan was performed my cancer and the tumors were obvious and had unfortunately already metastasized.

So did the GI issues signal the growth? I don’t know.  Was the back pain the indicator?  I don’t know.  What I do know is that since my surgery, I have not stretched or worked out my back and I have not had any back pain.  So the tumor could have been hitting a nerve causing it to manifest as back pain.  Again, I don’t know.  But what I can recommend is, get checked out if you have recurring back issues or if you have GI issues (loose movements, overly frequent movements, changes in color, etc.).  I wish my “time” had been less important back then and I may have caught this earlier when it was still treatable.

Q:  Do you feel differently now than you did before?

A:  I certainly pay more attention to how I feel than I did before.  I’m not nor have I ever been a hypochondriac and I rarely got sick, so this has been a new thing for me.  Chemo week is pretty standard, you are going to feel bad and wrestle with the side effects.  During non-chemo weeks I have to pay attention to changes in my poop and any new aches or pains in my abdomen.  Believe it or not, chemotherapy can cause other things like ingrown toenails (called chemo toe on the inside), joint pain, and of course bone pain when you take the neupogen shots to increase white blood cell production.  I think the biggest thing is balancing little aches and pains with not letting it get in the way of what you want to do either for work or your family.  There are things that just need to get done, so you go do them.

We’ll have more questions and answers as they come in and space permitting.  Thanks again for all your love and support.  I cannot begin to tell you how much of a difference it makes.  All of you old athletes out there know that a great coach could always bring more out of you than you thought you had.  Shouting at you to give one more rep, dig deeper, etc.  That, in effect, is what many of you are doing for me.  I know that there are some things that I will never experience.  I will more than likely never see my daughter get married.  I will not ever meet my grandchild(ren).  I won’t be around when they are looking for their first jobs.  I will most likely not be there to teach the kids to drive (I will reach out to a couple of you for help here – no offense Nita).  J  But for now, I can give one more rep.  I can swim one more lap, and I can go one more round of treatment.  How do you eat an elephant?  One bite at a time.  TeamMarco@austin.rr.com

 

 

 

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