The Pendulum Swings

The pendulum swings

 

I loved Edgar Allen Poe when I was a kid.  My mother introduced him to me when I was younger and perhaps this is why Josephine loves Halloween so much.  I used to consume his stories: The raven, Tell Tale Heart, the Pit and the Pendulum, they were fantastic.  Now I probably watch movies more than read because of my body’s pendulum swings.  And reading glasses put strain on the septum which causes another issue, but that is a longer explanation.

Hour 3 of our 15 hour day at MD Anderson Monday

After our big 16-family holiday at the Marriott we headed off to Houston for chemo.  On the upside, our hotel room was very nice.  On the downside, the hospital/infusion room they checked me into had a bed that wasn’t fully functional.  I’m not trying to sound ungrateful, but this was bad.  I could feel the bar under my back as if there were no mattress.  It was like being on a really bad couch bed in college.  I told the nurse (who was new) and she said it was supposed to be like that.  After about five and a half hours of repositioning, twisting and contorting, I just couldn’t take it any longer.  I asked another nurse if he would just sit on the bed to validate my theory.

Once he walked into the room and clicked a few buttons, he said that the mattress wasn’t inflating.  So they moved me to another room for the last four hours of the infusion.  I can’t believe I just took it for so long.  Actually, I can.  My tolerance for the little things has definitely changed and I try to focus on the big stuff.  The good news is although the chemo was hard and didn’t feel good, there were no incidents, rashes, or reactions.  We made it through and I left with my handy pump around 11pm. 

This was a hard one.  We slept one more night in the hotel instead of trying to drive back the same night.  The following days were tough on my stomach and joints.  I think with all the packing and unpacking, driving, and everything else, I was just worn out.  The good news is we were able to watch a few fun movies.  One of the greatest movies, in my opinion is Tombstone.  There is a great line near the end when Wyatt is visiting Doc Holiday in the sanitarium.  Wyatt is explaining that he wants a normal life and Doc retorts, “There is no normal, there’s just life.” 

That made me think a lot about my own situation.  I certainly have had varied and dynamic experiences.  I’ve been able to witness and participate in a bunch of different activities from sports, to art, business, travel, kids, and everything in between. 

I think my cancer has actually helped me grow more empathetic than I ever was.  Previously I looked at things through a certain lens and figured I knew the score, after all I was a pretty smart guy.  Now I understand that I have no idea what someone else might be going through and for me to judge superficially based on a quick observation may not lead me to the correct conclusion. 

On Tuesday night, I didn’t feel like getting off the couch for dinner.  So the family joined me for a fun family movie night.  We watched The Sandlot, one of our family favorites (and perfect with the College World Series looming).  There is a scene where Smalls hasn’t yet learned to play baseball and runs the ball in to the pitcher from the outfield.  The kids were laughing and I asked, “What do you do with a ball hit into the outfield?”  Immediately and in unison they both shouted, “Throw it to second base!”  I was so proud (don’t get technical; at 6 and 8 years old, that is where you throw it.  There is plenty of time for double cuts on cinch doubles with the first baseman trailing the runner).  It was another of those moments when you know they are going to be okay.

Now that school is out, the kids brought all their stuff home and there were journals about their “favorite” this and that.  Turns out both Josie’s and Connor’s favorite sport and hobby are baseball.  Now neither child is exceptionally gifted athletically.  They are adequate and can run without falling over, but are not elite.  But I had a strategy early on that I would not burn them out by force feeding any specific sport or drill into submission in order to live vicariously through their play.  Instead, I chose to try to help with steady improvement in small doses, focusing on the fun of the game.  Well, I’m not sure if my strategy worked, my prayers were answered, or my kids are just awesome, but they love baseball and that is my dream come true.

The book is coming along nicely.  I’ve already gotten some cover proofs to approve and I think we are close.  It is kind of exciting that I will likely get to see it through, it was looking like a posthumous publication for a while.  I don’t know how well it will do and frankly, I’m not that concerned.  I just know that my friends and family (and more importantly my children) will have something to remember.  And they can see how I handled the adversity of my first year dealing with cancer.  More importantly, I hope it can help some people understand what it is like being both patient and family caregiver.

Speaking of the cancer, I think we might be making a dent.  I can tell you that my lung capacity has improved…even more over last treatment.  I am coughing less over the last few days and am able to sleep better and in more positions.  If you remember there was a time when I could only sleep on one side and at a slight incline.  The pendulum portion is my joints and body are really aching.  But my buddy Pete said that my voice actually sounds like my voice again, which is nice, I suppose.

I have mentioned previously that the old joke is: “if the cancer doesn’t kill you, the chemo will.”  It chips away at your body, making it harder to do things like walk, stand, and move around.  Further, the mucus build up in my nose is almost impressive.  I blow out these cricket sized boogers that the kids love to see (don’t judge).  The boogers are exacerbated by use of my reading glasses, so I try to use them sparingly.  But when unattended they lead to the coughing/retching fits we all know and love. The side effects will always be there, but I can take them.  No one will accuse me of taking the path of least resistance when trying to stick around for the family.

But on the plus side, my CEA score is now 45.4!  If you tell that number to a newbie cancer patient they’d probably faint or start sobbing.  But I was at 60 two weeks ago, and what I have learned in the last two years is that trends sometimes mean more than raw numbers.   This is a GREAT indicator of efficacy.  It made more than a few people pretty happy last night when I shared it with my tribe.  Because as stated a few weeks ago, the statistics were not on my side if you know what I mean.

Even though the chemo sucks, the alternative is definitely less attractive, isn’t it?  So I will shuffle around, grin and bear it.  Because I am alive and I’m enjoying my family, my tribe, and life.  In fact, I’ve got my 30^th high school reunion coming up this weekend.  I clearly cannot attend all the events or I’d be completely worn out, but I will attend the main event.  Though my body is feeling somewhat worn down, my lungs and ability to speak for longer durations seem to be improving.

That will come in handy because I have a feeling I’m going to do way too much talking on Saturday night.  I hope that everyone understands that when I run out of juice, or if I lapse into a coughing fit, it is what it is.  I am also looking forward to this event because I have zero grudges, all sins are forgiven, and I have nothing but love and good memories in my heart.  I don’t have scores to settle, there is no one to ignore out of some petty ridiculous event that may have happened 30 or 20 years ago.  I am a clean slate and hope that most will approach me in the same way.  I am clearly not implying that I was perfect or wasn’t a shit head to people.  I was.  But I let all things go when I got cancer.  I figured I had too much poison and baggage in my body to carry that extra burden.  Cancer is heavy enough.

It has also helped in our marriage.  Once I stopped piling expectations on to the family and simply started enjoying my family for who they were, things not only got easier, but better.  Sure my wife is still late for almost everything, but she is a rock star!  She puts up with me and she makes everything around us better.  My life has had many twists and turns when it came to dating, jobs, school, sports, and the like.  But I fully believe God put everything in my path exactly when and where I needed it.  There were lessons for me to learn, challenges to overcome, failures to endure, and victories to be had.  I can never fully explain how truly blessed I am.  But when I hit my knees each night, there is no lack of gratitude.

Even though my doctor is what Nita calls “cautiously optimistic (I call it pessimistically hopeful)” I think things are going well.  I think he is legitimately surprised at how well the desensitization treatment is going.  And truly, I didn’t anticipate I’d be doing this well during this time.  I figured we’d be on the downward slide, but still had faith that something was on the horizon.  When the trial fell through, it took a lot of wind out of our sails.  But we prayed, stayed faithful, and decided that God knew what was best for us. 

Then lo and behold the pendulum swung.  The body aches, but I can breathe, move around the house more effectively, shower, sleep, eat, and do many of the things I clearly took for granted just a few months before.  So far, my mind is still humming along, although I am starting to forget little things.  I make notes to myself or ask Nita to send me emails to remind me of things.  But those are little things.  And for the record, should I pull through this whole ordeal, unlike Johnny Ringo in Tombstone, I did NOT make a deal.  It would be legit.

Picture from our 1987 senior variety show - the Tex-Mans

So here we are.  About to attend a reunion to which I was actually reluctant to purchase advance tickets a few months prior.  Watching my children have a wonderful beginning to summer.  Breathing in the warm laughter my wife and kids so regularly provide around the house.  Technically summer is the middle of the year with fall and winter to follow.  I’m not sure what the timeline is for me, but I am grateful for the time I have been given.  Remember to enjoy each moment, because the next one is not promised to anyone.  Savor the now, it can change the way you look at everything.  May God bless you all and may you enjoy this wonderful season with your families.  I know I will, no matter how long it lasts.  TeamMarco.