A Tribe Called Balcones

A Tribe called Balcones

 

This past weekend was Memorial Day weekend.  One can always see someone thanking a veteran for their service, even though the holiday was meant to honor the dead.  On one hand, I personally don’t think it’s ever a bad time to thank a vet for his or her service. On the other, I wonder if it’s ever taken as a backhanded compliment like, “well, you came home, too bad, but thanks for getting in the fight anyway.”  I doubt it, but more importantly, people come together, celebrate those who served, and remind us about what made and continues to make America great and free. 

This was the last week of school for the kids.  Together about 16 families came together and decided to meet at the JW Marriott in San Antonio…unbeknownst to the kids.  It was hard keeping 32 adults from spilling at least a portion of the beans.  The kids were all surprised.  It was pretty fun picking up the kids up an hour early on the last day and telling them we were getting straight on the road for vacation. 

Part of the Tribe while I'm trying to write this

They were extremely excited at the prospect of seeing all their neighborhood friends at a waterpark and hotel/resort.  Once we got to the hotel, the play was non-stop and the moms and dads all started partying and having fun.  I was actually quite worn out from packing up the car and unpacking.  I took a small nap and my back was killing me.  So I holed up inside the hotel and tried to recover – of course with a few coughing fits thrown in.  I stepped outside a couple of times to check on the fun and pitch a few washers.  I felt like Punxsutawney Phil just coming out to check my shadow.

The guys came into the room to catch a bit of the spelling bee and occasionally we’d check the basketball score (not sure which was more exciting).  In my state, I couldn’t speak for long, it would launch me into a coughing/retching fit.  So I was the weird kid in the corner who just stares at people.  But luckily when you travel with your tribe everyone understands and gets it.

After my first half day and night mostly in the room recuperating, Nita asked if I was having any fun.  I told her (with all sincerity) that I was just happy to be there.  And I meant it.  Just a few months ago, I wasn’t so sure that I’d be able to attend.  And I mean that in the way you first thought it.  Many of my friends also thought that it wasn’t a certainty that I’d be there.  In fact, at a friend’s surprise birthday party on Saturday night I was told how much better I looked than just a few weeks prior.  Some were even worried that it might be the last time they saw me upright.

They were right, I really felt that right before that first dose of the FulFox, that this was now or never time.  If I didn’t make a significant improvement in a very short period of time, my cousin Robert might become my new and last chauffer (he owns a funeral business). Thankfully it did work.  After two weeks, I could feel the difference in my appetite as well as my lung capacity, energy level, and functionality.  For example, previously taking a shower was tough.  Our shower is a complete enclosure, I think it used to have a steam function in the mid-80s.  The good news is that they installed a window in the shower wall. 

It mattered because during the worst part of my lung issues, I could barely stand being in the shower.  The steam which used to be a nice soothing thing, now was sticky, thick, and heavy to breath.  Holding my head under the water to rinse the soap from my face and head took more breath than I had in one go.  So I had to do it in several spurts, frequently moving my nose and mouth to the window to get fresh air.  It was kind of miserable, but I didn’t want to complain or alarm Nita or the kids.

Josie lost a tooth on Saturday afternoon

So in addition to being useless around the house I was also stinky, reducing my showers to every other day.  After the shower, when I dried off (and there isn’t a lot of me left to dry off), it would take a few minutes to catch my breath again before I could complete my morning routine.  Getting dressed also took energy and effort.  What this has taught me is the lessons I learned as a young athlete about pushing through the pain to get to the finish or whatever has been a help and a hindrance.  A help with some of the side effects and nausea/fits.  A hindrance when I don’t listen to my body when it is time to take a break.  But I’m getting better at picking my battles.

All that has changed dramatically in just two treatments and a lot of answered prayers.  I can now shower, keep my head under for the rinse, and do all those things that we all take for granted.   So when Nita asked if I was doing okay and was glad I came?  I really meant it when I replied, “Honey, I’m just glad to be here in any capacity.”  So although it might take me a bit more time to recover from what you would consider normal activities, I am more than pleased that we came.   Plus the whole tribe takes care of us and the kids.

Nita tells stories about her father growing up on a block with all his cousins and big Italian family.  Most of them revolved around group play, group parenting, and multiple first aid stations.  I thought it was a cute concept that was rare and possibly non-repeatable feat.  But we are actually living in a similar situation.  Our little community looks out for each other and the littles. So while I was in the hotel room recovering, my kids were running around with a bunch of their friends and I knew they were safe and would be corrected if they got out of line.

The big talk for the last few days has been my CEA score.  On Wednesday I went to get some fluids and they ran some bloodwork on me.  I requested they also measure the CEA level.  It takes two days since they farm it out to another lab.  Anyway, my normal nurse called and said that she wouldn’t be there on Thursday, but that her back up was instructed to provide the number no matter what it was. 

When I called, they didn’t have the number quite yet so they promised to call back.  So I’m loading up the car getting ready for our trip and the phone rang.  I knew it was them. The poor nurse started stammering to spit out the number and said, “50.1” I replied, “OH THANK GOD!”  She was both surprised and put at ease.  I then told her my latest number at MDA was 60.1.  Not a bad dip.  It certainly was a nice validation of the improvements I’d been feeling around the house.  I was concerned that perhaps the lungs cooled down but the liver might spike, and my white cell count is still high.  But for the number to go down that much after two, well It made the trip a little happier and my chemo on Monday easier to look forward to.

Last time the chemo was pretty rough on the third day.  But with the scores dipping like that, and the ability to make a trip with my family, I will take it and not complain. Besides I have access to the best doctors and technology right now.  Unlike some of the folks decades ago.  I mention this because the other night Nita and I were watching an old war movie (one of the best parts of Memorial Day weekend), it was called Destination Tokyo with Cary Grant.

In this movie,  set in WWII, a poor sailor aboard a submarine had acute appendicitis.  The only medical staff on board was a medic.  They happened to be passing underneath a Japanese warship so surfacing was not an option.  Anyway, the conversation between Grant (Captain) and the medical guy was pretty hysterical with Grant’s final argument being, “Do it, you have books with pictures, don’t you?!”  I could not imagine my situation under those circumstances.  I suppose it’s another thing for which to be thankful.  Since it was a movie, it was a success and they even thanked God and prayer for the success.  The good old days for sure.

Hard to see everyone, and even harder to corral them for a picture

Friday, as you well know, I was unable to complete the blog.  We went to the water park and I was surrounded by what our clan calls my “sister wives.”  Many of the lovely ladies who ran the committees for my tournament and dinner in December were there.  They fussed over me and the family and made sure we had everything we needed.  Although it was distracting, I wouldn’t trade them for anything in the world.  It truly makes me feel like when the time comes that Nita and the kids will be more than taken care of.  Unfortunately, I got worn out pretty quickly and had to return to the room for a nap and technically to just cough and retch a bit.  It happens after meals and at certain times of the day.  So I really wanted to save the tribe from worry.  As I’ve stated in previous blogs, it isn’t easy to watch, even medical professionals look concerned.  My wife and kids are used to it, but still ask if I’m okay or if I need anything.  Between hacks I usually give them a thumbs up until it subsides.

Friday night we had a glow party in one of the lawn areas of the resort.  It was really cool.  The kids were loving it and presumably not just because they were sugared up and it was about 2 hours over their collective bed times. It was so big and cool that you could see it from all over the resort.  The problem for me was it was about a quarter mile from our hotel room.  That happens to be quite a haul for me right now.  Luckily, I didn’t wheeze or cough when I got there.  Perhaps Divine intervention allowed me to just enjoy the families and my kids running around with glow sticks, necklaces, glasses, fidget spinners, balls, balloons, and hair clips.  You wouldn’t believe all the things that glow in the dark, but I bet we had them.

So I wonder if the other moms and dads feel sorry for me.  I hope not, I am alive and watching my family have a wonderful vacation.  Just because I can’t join the dads for golf, or do waterslides with the kids doesn’t mean I’m not having a blast watching my friends and family do them.  Participation means many things I have learned.  I feel truly blessed that I am able to continue to guide, parent, and help my kids grow, learn and play.  I am here.  I am present, and according to the CEA score, things are getting better.  I have no delusions that this is sustainable forever, but it certainly may have bought me another summer with the family.

The kids talk about death and cancer somewhat freely now.  I think it is good because when the time comes, there will be sadness but no shock.  I fully believe we are raising great kids who will be sweet, tough, and wise beyond their years.  Nita and I received the sweetest note from Josephine’s teacher at the end of school.  She said so many wonderful things about Josephine’s cognitive abilities, but was mostly impressed with her empathy and wisdom (for a six-year-old).  It was touching to be sure.

Pancakes and bacon, breakfast of champions

So I feel like we’re doing the best we can and making some good strides.  Nita of course is a Rockstar and keeping the house steaming on course.  I don’t want to go yet, but I do feel like the things I worried about almost two years ago are settled.  And on the plus side of the P&L every time things start to go a little south on us health-wise, things seem to turn around for us.  I usually have to suffer a bit, but I also usually end up learning another lesson about being there, parenting, life, attitude, and certainly gratitude.  Not an unacceptable trade off.

Thanks to all of you who have helped me learn and grow over the years. Thanks so much to my medical team who use more than pictures in a book to treat me. Thanks to my kids for being sweet and amazing.  Thanks to my wife for constantly overachieving and keeping the family humming along.  Thanks to my tribe for being Johnny-on-the-spot anytime we need anything.  Thanks to my mother for my upbringing and all she has done since.  Thanks to God for allowing me to learn and grow more in the last two years than perhaps the first 46.  Finally, thanks to all of you for your thoughts, prayers and support.  God bless you and have a wonderful summer.  I hope you too can be present for the important things (hint – they’re all important).  TeamMarco@austin.rr.com.