Words Mean Things

Words mean things

The weekend certainly started off with a shake-up.  College football saw the 2^nd, 3^rd, 4^th, 8^th, and 9^th ranked teams all lose. That certainly throws things into flux doesn’t it (Thursday number 5 would lose as well)?  Sunday, we celebrated my son’s 8^th birthday (a bit early).  He really loves military stuff so we had his birthday at the Texas Military Forces museum at Camp Mabry and then pizza and cake at Mayfield park among the turtles and peacocks.  At Camp Mabry they had a battle simulation and weapons demonstration.  It was awesome to watch the reactions to WWII weaponry being discharged and explained.  They even shot a bazooka and a Sherman tank.  Afterwards the kids were invited onto the “battlefield” to pick up spent shell casings.  I haven’t seen children that excited to hunt for things since Easter. Kudos to Nita for the planning and timing on what could have been a logistical nightmare!  In fact, the day after several parents reached out and said it was the most awesome birthday party they’ve ever been to. Thanks to all you veterans out there, God Bless America!

Friday night I played golf for the first time in a year and a half.  Our club had a “glow golf” tournament where we use glow in the dark balls and light sticks taped to the flags. I was a last-minute fill in for some friends and I had to promise Nita I’d take easy swings, not dislodge my port, and not bleed out. Since I’m here writing this, we know I kept my promise.  I did take it pretty easy since it was just a friendly fun tournament.  I may swing a club or two in my tournament coming up, who knows, we’ll see.  But the upside was it was dark so I didn’t have to worry about the sun beating down on me.  Remember chemo makes you burn quickly.

This soldier would give Connor his cover for his birthday

Saturday night a buddy came by to watch the A&M game with me.  He had been in Ecuador for a year and he anxiously asked me if he should have brought me some Viagra.  It was then that I realized the flaw in a Facebook post I had made to a small group of friends.  I made a joke and instead of saying that chemo made me chemically “sterile” I stated that I was “impotent.”  We both laughed and I immediately told Nita about it.  It was pretty funny but yes using the correct word matters, doesn’t it? Words mean things.

This is chemo week, yay!  The effects are stacking up.  Last week was the first off-week where I had a full week of tingling/neuropathy in my hands and fingers. I’m sure It’ll only get worse this week.  That means that the cumulative effect is setting in.  This is my sixth treatment so we’re half way to what they can hit me with at one time without a break (21st treatment if you are counting all of them).  I’m happy that my numbers were going down, but afraid that the neuropathy might be permanent.  My discussion with the oncologist Monday morning went like this: 

Me: So is my neuropathy a reaction to the drug which will dissipate once I stop or is it doing permanent nerve damage?

Him: Oh, it can be permanent.  You’ll feel the effects long after you stop the medication.  It may take years for the normal feeling to come back.

Me: Awesome, I’m not sure I’ll be around “long” after I stop the medication.

Him: I meant theoretically, but you never know.

So there is that. 

The neuropathy, acid reflux, and the mouth issues seemed to be the biggest nuisance during the front part of the week. Now that the cold is starting to come around the doctor recommended I wear gloves more and long sleeved shirts.  He said it would help; that I should keep warm because the cold really exacerbates the tingling, numbness, and pain.  Well nothing says Christmas like numb fingertips!

Oh and ice is out.  Remember when you tweaked a muscle, joint, or something and you would normally ice the affected area?  Yeah, I can’t do that now.  Heat, yes. Ice? No.  So, no more overdoing anything really.  Just in time for me to help coach Connor’s basketball team.  Luckily about 80% of basketball is conditioning and I’m out of shape.  This should go well.

I attended the mandatory coaches meeting on Wednesday night. It was miserable.  The training was fine, but I got home and wrapped myself in a blanket as soon as I got back.  This new chemo really does takes its biggest toll on me Wednesday and Thursday after I’ve taken the pump out.  Thursday practices are going to be rough.  I might just go buy a whistle and be the team’s sports psychologist.

Connor got painted this Tuesday.  He’s officially a cub scout and passed his first inspection.  He’s really enjoying the experience.  Unfortunately, due to chemo week, his momma had to go stand with him and get painted too.  Moments like these are when the chemo hurts more than the physical side effects.  Even more disappointing is that the kids are so understanding at this point.  It has become their reality as well.  I remember so many times running around playing one on one with my dad and playing catch in the yard and I fear that my kids won’t have that as a strong memory.  It can be discouraging, but the sun will rise tomorrow and we’ll do something else together, like go to this weekend’s Aggie football game for his birthday.

The poisoned feeling is back.  I went to pick up the kids from school on Tuesday and two separate moms came to the car and told me I didn’t look so good.  So much for a game face.  Wednesday was worse.  I was feeling both tired and poisoned.  It’s hard to try to be chipper when you both look and feel like hammered dog shit.  Then the CEA score came back and it was 4.7.  I don’t think it is time to panic…yet.  Going up a tick doesn’t necessarily mean anything.  If it continues to go up…Houston we might have a problem.  Well just hope and pray for the best here. But let’s just say I’m glad I didn’t buy those non-refundable plane tickets to Hawaii for August.  It is hard purging the voice in my head screaming “23.7 months life expectancy – there is no cure.”

In chemo camp, I had a nice chat with another camper.  I explained my journey, blog, and how I chronicled it.  As he sat there listening I could see the pain on his face as he relived his year dealing with his cancer and chemotherapy. He reaffirmed that the book needs to happen.  He stated that currently there isn’t an inside look at what goes on in the heart, mind, and body of a cancer patient. He also said that his memory is failing him.  We call it Chemo brain.  It isn’t like Alzheimer’s or anything, but there are times when you are having a conversation with someone and the correct or perfect word just isn’t there.  Previously it easily leapt into your head during the flow of your conversation, now you kind of struggle with it.  I used to write my blog on the first sitting and maybe do a single edit.  Now it takes three or four read throughs and I constantly have to send myself notes reminding me to include things (or ask Nita to email them to me).  It isn’t so bad I need to carry a notebook around, but the hamster doesn’t spin the wheel as quickly as he used to.

Thursday evening there was a petting zoo for the kids, the animal whisperer was on his game

One thing he said was disturbing, but all too common. He said he was thinking of not continuing the medication…it has been “enough.” I told him that I felt cancer would ultimately win, but I would never let it beat me down.  I told him that my children were eight and six and giving up wasn’t an option for me.  His head dropped and he was speechless for a moment.  He then said he couldn’t imagine his scenario with young children.  We talked about him for a long while, he was a marathon runner and has climbed all the peaks in Colorado. Once again showing that cancer doesn’t play favorites.  It also shows that I have been caught up in an older man’s disease, it wasn’t meant for younger guys with a lot of responsibilities to their family.

I finished my book this week.  I’ve shipped it off to a few author friends for third and fourth edits, (should I have used tertiary and quaternary now that I’m an author?). Anyway, once I get feedback and edits, I’ll start looking for avenues and vehicles to get it out there.  Thanks again for all the direction and requests to pull this off.  It was a little painful reliving the entire year going through each week with the benefit (or curse) of hindsight, but I think it will make a pretty good read.  I hope a few hundred thousand people agree and can provide the family with some security.

Before anyone gets too wound up about the changing score, remember it is a data point not a trend.  I know I said that once before and it spiked to 40; and this is the last realistic drug regimen for any shrinkage that can be done locally.  However, there are some containment drugs still on the table and of course there is a clinical trial at MD Anderson for which I might be eligible and able to get into (I’m not sure if this part is for you or for me).  There are still options and no reason to get discouraged.

So as we slide into Thanksgiving week, I am cautiously optimistic.  At the same time, I am wildly thankful for all the wonderful gifts and experiences I’ve been allowed to have and share this past year. This time of year is always special to me because eight years ago, after several years of trying to get pregnant, we brought home our sweet Connor 4 days before Thanksgiving.  I will never forget how full my heart was that year.  Two years later we’d repeat with Josephine just 15 days before Thanksgiving.

I received a note from a woman who stumbled across my blog this week.  She reached out and said that her father had just passed away from colon cancer this October.  He lived exactly one month from diagnosis to death and the family was reeling from the sudden change in their lives.  How is that for perspective?  Thankfully, I was given more time.  I don’t know if it was a miracle or a test.  But by the glory of God, I was given a second chance to be a better person, father, and friend; and luckily I don’t think I have blown it.  So enjoy your Turkey and football fellow travelers and be truly thankful for the gifts around you.  I’m sure if you look harder you just might see a few more than you thought.  TeamMarco@austin.rr.com.

to attend the dinner or tournament please register on the website, it's filling up fast.  If you cannot attend but want to support, there is a raffle where you can win a diamond or a big green egg.  You do not have to be present to win.  https://martinezfamilycancerfoundation.org/dinner-auction/raffles/