Gunfighters and Trail Rides

Gunfighters and Trail Rides

The other day I was opining to Josephine how families were a little closer back in the day than they are today.  One of the reasons I cited was a pure lack of in-home distractions.  I even told her about the barbaric practice of families only having one television set…with no remote control.  There were no ipads, computers, smart phones, or any other device which would allow you to still be in the house/room, but yet miles away from the nearest conversation.  And if you wanted to watch a show, you’d better hope your parents either didn’t want to watch something different, or didn’t feel like watching TV.  And video, I remember when my dad bought our first top load VCR.  I must have been around 12 or 13 and it was life changing. Doesn’t that even sound crazy now?  Didn’t want to watch TV?  Josie was floored by the very thought of such a situation.

Back then I remember my dad loving westerns, playing the guitar, and having an affinity for Marty Robbins records. I could probably still sing along to Big Iron and El Paso.  I even remember the album, Gunfighter Ballads and Trail Songs.  These songs burned a big swath in my memory and are probably the reason I love all the Clint Eastwood spaghetti westerns, and possibly why Connor wants to go shoot the paint ball sniper rifle after school every day.

Every day after school, Connor wants to shoot the sniper rifle (paint ball)

When Nita and I first got married we talked a lot about how we wanted our family dynamic to play out.  It was more than basic logistics, but it included a very specific provision that we not eat in front of the TV.  We would eat at the table and have family discussions.  On rare weekend occasions, we’ll all retire to the man cave and do dinner and a movie for “fun family movie night.”

The dinner table conversations have given us some really great moments over the years.  From the kids singing songs in their high chairs to fart etiquette during dinner.  Rarely has there been a dull moment.  When I first got cancer and especially on weeks with my pump, it was impossible to avoid talking about.  So of course, the conversations led to deep Q&A discussions about everything cancer.  It was helpful in both the short and long runs for us.  The kids are informed, understand the terminology, and are very understanding of the reactions of others around us.

This week the dinner table gave us a doosey.  Now in my defense who among us doesn’t think Chris Farley movies are family friendly? I certainly thought so.  Anyway, Connor and I were going back and forth between a baseball game and Black Sheep one evening.  There was a scene where David Spade was reaching in his pocket and telling people he had something for them.  He would then pull out his middle finger and give them the bird.  I must have chuckled because Connor did it to Nita the next night at dinner.  “Hey mom, I’ve got something for you. Here you go.” 

We were both mortified, Oh my gosh, where did he learn this?  Connor got so upset he started to put himself in time out.  As he was walking, almost between sobs, he said, “I’ll never watch Black Sheep again!”  Oops.  My fault.  I fessed up and we hugged Connor to settle him down.  He is such a sweet kid he had no idea what he was actually doing.  Explaining it to Josie was another fun adventure and of course she wanted to try it one time.  No ma’am, that is not for polite little girls.   The fun never stops.

Last Friday I started another round of FulFox chemotherapy.  It was the Oxaliplatin that we all love and remember.  This time they gave me four diluted bags of Ox instead of one full dose.  About three quarters of the way through the third bag I started getting a slight rash.  Nita didn’t want to see it, but it was there and I did the scratch test too (all my med people out there know what I’m talking about).  So they stopped the infusion and pumped some Benadryl and another steroid.  After a bit, we started up again and luckily it was uneventful.  We got the pump and headed home.

Nita pulled into our driveway just after 11:30pm and we were glad we drove home to our bed instead of having to wake up at 6 and blaze home for the three baseball games on Saturday and one on Sunday for good measure.  Connor and Josie’s baseball games were a hoot (Connor even found a turtle in the creek).  The most touching thing was when Josephine saw me in the stands.  Last year I tried not to sit around everyone when my pump was in.  I thought it might freak out the kids or the parents, so I just didn’t.  This year, man I’m doing everything I am able to do.  I don’t care who thinks what.

But Josephine remembered the policy from last year.  So when she saw me, her face lit up and she came up to the fence.  She said, “Dad, do you still have your pump in?”  I said that I did.  “But you never come to games with your pump.”  I told her that this time I did because I loved her.  She beamed so brightly I thought she was going to leave the ground.  About half way through her game, Connor’s game started.  I walked over to his field to watch most of his game.

Josephine with the game ball

I came back just at the end of Josie’s double header.  She came running up to me after and said that she had been given the game ball.  She said, “Dad, I knew when I saw you with your pump, but still came to see me that I was going to do my very best.  Since I know you aren’t feeling good, but you did it for me, I was going to do my best for you.  I even told a teammate that I was going to get the ball today.”  My girl!

Sunday night a nurse friend from the neighborhood came by to observe Nita taking the pump off and flushing and de-accessing the port.  Nita was awesome, which is good because next week we have to do it again with an all-day thing at MDA on Friday and a port/pump removal on Sunday.

The side effects were manageable this week.  The nausea was usually preceded by a big coughing fit and then a small retching fit.  Like I’ve said before it sucks to watch and it sucks to be the one doing it for sure, but after a few minutes it subsides.  If I had to live like this to the end but got a few more years to watch the kids grow, I’d take the deal.

Sleeping has gotten a little bit easier.  I can now lay flat, but only on one side.  That has led to an out of balance back, but I went to my chiropractor on Thursday morning and he helped adjust things back to square.

Eating has improved.  More things actually taste good or better than before.  Plus, the cold sensitivity has not fully kicked in yet.  So I was able to get some milkshakes (high calorie) and even eat a pudding or two.  The net result is I finally stopped the weight freefall at just under 60 pounds and even gained back a pound this week.

Josie gave a class presentation on Thursday which of course Nita and I attended (she nailed it)

Everyone has been very positive this week.  I think the kids are hoping for a miracle as many of us are.  Connor is getting his first Communion this weekend and we’re all looking forward to that.  I had my best friends over on Thursday night to hang out and watch a movie.  Since I don’t get out much for some obvious reasons, I figured we could still get together and they wouldn’t care about my coughing and spitting into a cup, they never have before.

It was nice, but very much like a theater.  Not a lot of talking, but we were all together.  It was nice and I hope we do it more frequently.  There is nothing like being around great friends when you are not at your best.  I think the difference is that you don’t actually have to say anything.  Over the 20-40 years of friendship with these guys I think we’ve said everything.  So we could just hug, laugh, smile, or gesture and everyone got it.  I wish I had more energy and could maybe talk for longer durations, but it is what it is.

So how am I feeling about everything?  Well, that is a great question.  Here is the honest answer.  I want this to work for as long as it can, perhaps even have the miracle effect.  I also feel parts of my body changing.  My lung capacity is for shit.  I seriously struggle to just go up a flight of stairs.  Okay, so the stairs portion is nothing, it is the catching of the breath after the feat.  Coughing fits produce the same labored breathing. And my muscle mass is depleting beyond recognition.  Without a shirt, I look like Kevin McHale (like someone left the clothes hanger in my shirt).  My traps are gone and my arms are small. 

I also cannot lounge in as many positions as I once could, it induces a coughing fit.  So I have to be at one of three or four basic angles.  Transitioning from one to another sometimes induces a coughing fit.  Connor, bless his heart, still freaks out a little when one of these initiate.  He constantly asks if I’m okay or I need an inhaler, or anything he can do.  My boy.

That is the trouble with this new thing.  Chemo days make you want to just lie down, cover up, and binge watch something.  But with the added lung issues, I can sit on the couch and binge watch, but I have to move around and stand up to avoid my lungs from compressing for long periods of time.  Doesn’t sound like much, but when you are sick and just want to lie down, it is a bigger deal than it sounds.

Sticking with the original question I feel a little like a gunfighter.  Like I’m pretty good, a fast shot, a good aim, with good reflexes; but there are all these other gunfighters always wanting to challenge me.  Every day there is another challenge to be met.  Don’t get me wrong, I’m not afraid to strap up and go to work; but in the back of your mind you wonder if today is the day they get the better of you. 

That is how I feel. I am hopeful, optimistic, and loving the kids and Nita so much right now.  But I feel the drugs and cancer taxing my body and wonder which will last longest.  But these decisions are above my pay grade, aren’t they?  Only a select few truly know how this will play out and I don’t think any of them are human. 

So we trudge along and are thankful for each new day.  Each time I get to run my fingers through the kid’s hair and tell them I love them during a big hug.  Getting to enjoy smelling their little funky smells when they’ve been playing outside hard and they come inside all sweaty. And basically just trying to make this seem as normal as possible.  I am confident the kids are going to remember many of the lessons, but now is time for really living in the moment.  The enjoyment of being together, sitting around the dinner table, no television, just talking.  Being present, laughing, telling jokes, sharing ideas and events of the day, like we used to do, back when we all had one TV and no remote.  TeamMarco.