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