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.