Feeling is Believing

Feeling is believing

 

This week was the first week of the new chemotherapy regimen FolFox. I felt fully informed and completely prepared for it. I went into the infusion center and had my bloodwork done and I was healthy enough for the juice.  So they started on the first of six bags.  All along the way I had been told to avoid cold food, drinks, and objects the week of infusion.  I honestly thought there would be a ramping up period or a cumulative effect of the drug.  I had no idea it would work so quickly.

Monday wasn’t too bad, cold sweats and chills and a lack of appetite. Pretty standard.  I also had that nagging pump attached again.  As an aside, it is sometimes possible to tone out the affliction when you are doing things.  Taking a shower, playing with your kids, driving to the store, etc.  When you have a pump injecting 5FU into your chest it is impossible to ignore.  It isn’t just the fact that it must be either carried or tethered at all times, it’s the sound.  Every 24 seconds you hear another little burst.  It drones out a bit when you are really busy, but when you are just trying to get to sleep, it is harder.  The bursts aren’t close enough together to completely tune out, and yet they are too close together to fall asleep in-between.

Obligatory Gondola ride in Venice - Honeymoon 2004

So you try to think happy thoughts while drifting away so your dreams aren’t filled with crappy images and annoyances. This is what I think was the best part of my five-week reprieve. The time away with my family was wonderful and it was pump free.  That will more than likely be the longest I will ever spend away from my little poison injecting companion.  This is the new normal, a two week cycle indefinitely…as long as it is working.

So back to the side effects.  The neuropathy took hold a bit quicker than I anticipated.   My mother brought me some take out Chinese food on Tuesday for lunch.  I reached into the refrigerator for some soy sauce and it felt like it was burning my fingers.  It was crazy.  I actually grabbed it a couple of times to make sure I was feeling what I thought I was feeling.  How could this be happening so quickly?  When will it subside?  I’ll let you know when I do. 

I also am already feeling some numbness in my fingertips.  It is supposed to clear up within 14 days of infusion…just in time for the next infusion.  Also another side effect is a feeling of tightening in your throat.  You know that feeling where it is difficult to swallow and it feels like it’s closing up?  Well, it is just a feeling and not actually any constriction of the throat, but it sure gives you the sensation like it is.  But it is temporary and comes and goes, so at least I can talk myself down off of that one.  The downside is I am constantly gagging.  I used to take my morning six pills all in one go, now I have to space them out in two or three shots.

Wednesday night the PTA of our school had a little get together for the kids in preparation for back to school.  It was at a skate park and I should have known that just hours after getting my pump removed I wouldn’t be quite ready for it.  But I went anyway.  It was nice to see all the familiar faces and watch the kids having fun, but I had to get a friend to drive me home (no Uber, thanks Austin!).  This is a tough drug cocktail and I’m hoping it will wear off soon. 

Thursday wasn’t much better, I was tired, achy, and the neuropathy is still intact.  Josie brought me a popsicle to break apart and it is uncanny how much cold just burns your fingertips on this drug.  Good think I can drink my bourbon neat, but I am not looking forward to squaring off with this one as it builds momentum in the cumulative effect.  In other words, it’s like fighting the same bully every two weeks knowing he’s only going to get stronger. 

But that is what you do with a bully isn’t it?  You punch back and you punch hard.  You don’t sit there and take it or the bully will come back again and again.  Now I clearly don’t expect the cancer to go find a weaker host, because this is a metaphor and that’s not how it works in the real world.  Although I wish metaphors would react the way we want them to, it would be much easier wouldn’t it?

I found out my CEA score was a nice even 40 to start the new regimen.  During the last examination, I also informed the doctor that I was feeling abdominal pain in addition to my lack of appetite (I even lost five pounds in Colorado).  He very matter-of-factly said, “those are the tumors.”  So there is that.  We’re going to hold off on the colonoscopy and the root canal because Avastin (one of the drugs) delays the healing process and inhibits clotting, and we’d have to stop that portion of the cocktail for the procedures. 

But what is the alternative?  Not as attractive that is for sure.  So we press on and do what needs to be done.  Which brings up the golf tournament and dinner.  I have a team of folks which comprise the “event committee.”  They are dear friends and extremely talented.  I am also blown away at their skills and experience in doing events such as these.  What is most touching is how much they are putting into helping and trying to make this an amazing event.  We’ve lined up some pretty cool things for it and I am shocked by the creativity and tenacity of the group.  Stay tuned for more details.  But I am certain that when the details come out, no matter how many of these events you’ve attended or planned, you will be surprised.

Another touching thing are the emails and various forms of encouragement I have been receiving.  It makes me feel like my journey is even more worthwhile.   Imagine if you were told that you had to carry a burden, but by doing so you could save or change 20, 30, 50 lives.  Maybe more.  Would you do it? 

I wasn’t actually given that choice, but I think I have embraced the challenge.  And by sharing my journey I have heard about folks getting colonoscopies, prostate exams, and checking on those nagging things that would normally have been left unattended.  Further, one of the most amazing messages I received was from a neighborhood friend.  He stated (paraphrasing) that for his entire life he’d been consumed with the end result and the accomplishment. During his life he has focused on achieving his goals and considered the accomplishment of the goal the most important thing.  This was for work, family, everything.

After following my blog, he has now realized that he had missed so much along the way.  Kind of a “stop and smell the roses” epiphany. So he’s changed his life to notice these things.  He’s changed the way he deals with his wife, his children, his friends, and family.  He believes that others have also done the same and it is impacting their family dynamic in a positive way.

I’ve gotten this feedback from several others as well.  People I’ve never met, but who read the blog and share their thoughts with me.  I am truly humbled by the love and support.  I know when you are busy it takes a lot to stop what you are doing and find the time to send a note of encouragement, share a story, or lift up prayers.  But alas it is happening and coming in droves.  Well, that sure makes cold soy sauce burning your fingers seem like a small thing doesn’t it?

Don’t get me wrong, I too was part of that lifestyle.  I looked past the smiling faces of my kids on my way to the next project.  I yelled at them to get ready because we were in a hurry to do some inane thing that in the grand scheme of things didn’t matter.  And when my wife needed me to just talk about the day or validate an idea, I ignored her needs to attend to some business email that needed to be answered at 10pm…in my mind.  I am clearly not the first to throw a stone.  But, don’t worry, there is still time.  And I have found my family is very forgiving and appreciative of the time that is restored.  I used to make a joke about learning from the experience of others.  It was, “Well, we all don’t have to get hit by the same truck do we?”

I’m not sure how much time is left for me, but I know I intend to make the most of it.  I am not losing confidence or tolerance.  I can take the effects and I can overcome the fleeting doubts.  Every time I get notes, encouraging messages, or just see the eyes of my children light up as they tell me stories it gives me strength.  A friend posed the “Love your spouse” picture challenge to my wife.  And it has been neat looking at the pictures that Nita is putting together that shows our love and journey together.  I’ve had a pretty good run, and I’m ready to keep running.  Stick with me, we’ve got more to do, and we’ll enjoy the ride all the way.  By the way, I’ve got a bully to go punch, see you next week.  TeamMarco@austin.rr.com