Life is Like a Roller Coaster

Life is like a Roller Coaster

A few weeks ago XM radio introduced the Bon Jovi station.  I had no idea how much I would like it.  I remember going with a couple of buddies to stand in line for visa bands (how you did it back then) to have the opportunity to then stand in line for tickets.  That was 1986.  Anyway, one of his songs is called Roller Coaster and I liked it so much I put it on the video we had playing at the golf tournament and dinner/auction a couple of weekends ago.  I had no idea how relevant a choice it would be. You’ll want to stick around and read this one.

Last weekend was quite the humdinger.  We were still trying to get our energy back from all the high fiving, hugging, and storytelling in the cold rain.  On Friday, Connor won the school’s Principal’s Pride award.  He was very proud and of course, so were we.  Saturday Connor had his first ever piano recital and he was awesome.  He was the only one who had memorized his three pieces and played them extremely well.  He’s not a huge fan of playing, but he is so good at it.  His momma was a great musician, was the drum major of her high school, and even marched in the UT band.

Saturday afternoon, Connor and I went to main event (arcade) to go play some games while Nita took Josie and the grandmothers to the club’s traditional Nutcracker ballet show. Josie still doesn’t want to get back into dance, but she enjoys watching the other kids do it and taking pictures with them afterwards.  I suppose it would be like not wanting to go through two-a-days again, but still enjoying watching football, well maybe not quite that dramatic.

Then on Sunday, Connor had his first basketball game.  He loved it.  His inexperience showed, but more importantly his joy for the game shined even brighter.  We left at half time because one of my duties in the neighborhood is to be the sheriff for the Christmas cart caroling and hay ride.  I’ve been the traffic manager for the last 10 years and it is worth it to keep all the sweet kids and families safe for this wonderful tradition.  If you haven’t caught on by now, I take my obligations pretty seriously.

Connor is one of the "bigs" in the league

After the caroling, the club had another party for old and new members to mingle.  So by the end of the night, I was worn out.  Monday was a chemotherapy day.  Now my oncologist had mentioned that we would probably start backing off the Oxaliplatin pretty soon.  He even made the statement that after this many treatments he felt bad even prescribing it and we’d soon search for alternatives.  After my bloodwork, we discovered elevated proteins in my urine and my platelets were low, so they decided to skip the Avastin drip this time.

Josie and friends on the hayride portion of the trip

Well wouldn’t you know that I would have an allergic reaction to the Oxaliplatin in the chair?  Yes, if you remember from a few months back when I mentioned there were three “crash” incidents where all the nurses came to check on a patient having a reaction, well it was my turn to be the show stealer.  The nurses were visibly concerned.  I suppose the rash quickly spreading on my body was pretty easy to stare at.  So they brought the all hands team and quickly gave me another Benadryl push and a steroid injection.  After about an hour or so, the rash dissipated, they connected my pump with the 5FU, and sent me home.  Yes it would still be a full chemo week.

The rash spread quickly, but luckily that was the only reaction

Of course the week was miserable.  I took all my preventative meds for the side effects but I was still a little shaken.  Why shaken? You see, that was the last one.  That was the last major protocol option for me. Taking it a step farther, my CEA score was 5.1.  Up from the previous four measurements. So the trend is going in the wrong direction.  So in summary.  FulFiri – not working.  FulFox – allergic reaction and no longer working.  Stivarga – more containment than tumor reduction.  The only real option left is a clinical trial.  This was what I had feared last summer, but back then there were no available trials.  I believe there are some now.

Rising, but still in the controllable range

So thanks to all who helped, contributed, and supported the event and golf tournament.  We’re going to need it all now.  Leaving my job is a necessary next step.  However, the available insurance plans neither include my oncologist at MDA nor diagnostic testing.  I’m not sure if you’ve priced out the cash option on a CT contrast scan, but I don’t think there are any coupons.  And we could burn through our auction proceeds pretty quickly. But we’ll find the right one and make it work.  So far it’s COBRA.

The final piece of the roller coaster free fall was my oncologist’s reaction.  He didn’t come to the event stating that he didn’t want to get so close that it would cloud his judgment on medical advice.  I get it, I like him a lot too.  In fact, my personal opinion is that he doesn’t have the heart to tell me where we are in the process and wants the MDA oncologist to give me the straight poop instead. 

That gives us a lot to think about doesn’t it?  What are the options?  Will I get into a trial? Will it be effective?  Will we have to relo to Houston, or will I be a back and forth tourist? Will the book get made? Will it be a posthumous autobiography? How much time is left on the clock? Last year I asked for one more Christmas and one more trip around the sun, I just may have gotten exactly that, but I’m not ready to give up just yet.

Here is what I do know.  I believe in God and miracles.  My CEA score is still in a very manageable range, obviously it can spike in a hurry, but we are not there yet.  I am mentally and physically strong enough to be a good trial candidate.  And clinical trials have already undergone vigorous testing just to make it to human trial, so it isn’t like they are just flipping coins in the lab and saying, “Hey, we haven’t tried these two together before…what’s the worst that could happen?”  I have a family and community that loves me very much and is very supportive.  We will figure something out.

The other good news is now that I will be off the Oxaliplatin, I don’t think I did any permanent nerve damage to my hands, so maybe there is a snowball fight in my future?  I might be able to ice my bourbon in January.  For the record, that was really tough on my system (the Ox, not the neat bourbon).  Again, I’m not giving up, but I can definitely see someone on a relapse choosing not to go through it all again, I mean someone who doesn’t have small children.  And you never know what medical breakthrough is coming next.  All I have to do is keep above room temperature until it is ready.

I still think I have work to do here, so I am not losing faith or hope.  Sure I’m scared.  Who wouldn’t be?  But it’s funny, I’m not scared for me.  I finally and fully understand my father’s words to me before he underwent his bypass surgery 20 years ago.  If you’ve been a reader all along, you’ll remember, if not go back to January 28 for the “It’s all relative” blog. In it I discuss the conversation where my father is crying and I tell him it’ll be okay.  He replies, “I’m not crying for me, I’m crying for you!  You aren’t ready yet.”  Well he was mostly right, but I became ready pretty quickly and I was 26. Connor is 8, Josie is 6 (dramatic pause) how ready can they become and how quickly?

But I will address this situation with the same intensity with which I do most things.  Anyone who has seen me play or coach knows that I am in the moment 100%.  Hell even my game face on chemo weeks takes tremendous effort.  I don’t see how this new dilemma would be any different.  I am committed to getting better or dying trying. But just in case, NOW how amazing and special was the event ten or so days ago?

So now you see my trip to Wally world. My life is certainly more of a roller coaster than a merry go ‘round, that’s for sure.  The ride goes up, the ride goes down, with plenty of loops and turns in the middle.  But it is Christmastime and that is a time for miracles isn’t it?  Father Bill will be coming to anoint me in a week.  I’ll have a few long talks with God, and the kids, wife and family will make some fun memories along the way.  If it didn’t require faith, it wouldn’t mean as much.  Do not be worried, something good will happen. I just know it.  Trust me, have I let you down before?  TeamMarco@austin.rr.com