As Tom Petty said

As Tom Petty said…

 

Father's day 2012

The waiting is the hardest part.  This was a chemo week for me.  So the usual nausea, bowel issues, and nasty mouth tastes were ever present.  Most were controllable by medication, but it is still hard to completely fight that feeling of malaise the day you come home with the pump.  You just sit on the couch and sweat, nap, and feel miserable.  The kids came home from their camps and wanted to tell me all about their days.  So I put on my best game face and got excited with them.  It wasn’t too hard, they are such sweet kids and Nita did a great job of picking out the perfect camps that would keep them invigorated.

Here is what chemo pump week is like after 14 sessions.  First you settle into your chair and they access your port to take blood (to see if you are healthy enough for chemo).  I think the chemo port was the inspiration behind the back of the neck connection in The Matrix. It’s a lot like that except you don’t lay still, you move around with the needle securely fastened and taped down.  And no one teaches you Kung Fu.  Once the chemo starts going, a short four to five hours later they hook up the take home pump.  This is like a little purse with an IV line coming out of it.  They secure the line, tape it down, tape the connections, and make sure it is giving you a little cocktail every 24 seconds.  Now it isn’t that it is so big and cumbersome, but it is ever-present. You’ll forget once after you’ve taken it off and put it on an end table, but not twice.  You always remember the initial horror of watching it fall to the floor while still connected to you and wondering if the strip of tape on your chest is strong enough to keep it from pulling out of your body.  It was for me.  The second time you forget is when you are sleeping.  If you are a toss and turner, you have to be careful not to wrap it around your neck.  If you have to get up to pee, you need to be awake enough to remember to unsecure it from the bedpost and carry it with you to the bathroom.  Another mistake you make only once.  And you learn to ignore and sleep through the little sound it makes…every 24 seconds… as it discharges another burst into your chest.

You skip a shower the next day because it just isn’t worth it.  You just go on about your day with your ever-present friend and carry it with you either secured around your waist or over your shoulder.  So the day the pump comes out is day three.  A shower feels mandatory after sweating out the poison and generally wanting to look and feel better.  So you tape saran wrap around the needle portion and hang your purse-pump on the towel rack to get your bath or shower in.  Once you are done, you have to get ready again and work the purse through the neck hole of your shirt so the nurses can separate the 5FU line and hook up the fluids and anti-nausea drip once you get back in the trusty chemo camp chair.  Everywhere you go and everything you do in this 46 hour stretch is done with this bag and pump.  Every meal, drink of water, bathroom break, all your work by the computer, drive you take, everything.  It is like one of those forced punishments to teach a lesson.  Like back in the day when you caught a kid smoking a cigarette, you made him smoke an entire pack.  It sometimes feels like that, because you cannot get away from it, there is no break.  And I’m not sure what my lesson would be.  Don’t get cancer?

Wednesday was a tough day.  It started in the morning when I was about to go take a shower.  Connor warned me not to get my pump wet.  He said, “Daddy, you don’t want it to get wet and blow up. (It won't actually explode). It might blow you up with it.  Then it’ll just be mom and me and Josie.  We won’t have a dad anymore and I’ll be sad.”  If that wasn’t enough…when my lab results were given to me as I was getting my pump removed my CEA score was at 16.4.  That is higher than it has ever been, ever. So there are three possibilities or combinations going on.  Either there is tumor activity still going on (growing or spreading), the cancer has adapted to the current chemotherapy regimen and it’s no longer effective, or the minor toe surgery I just had which had me take anti-biotics may have helped register a false spike.  Now the numbers were high before the toe thing, so that seems unlikely but we can’t rule it out completely.  Plus, I’ve only been in two measureable cycles of the old regimen (for the second round), which may not have been enough to take hold yet, so that is a possibility.  I just finished the third round and we’ll retest on Monday to see where we are.  Without a full scan, we really can’t tell what the actual activity or motility of the cancer is. However, I think the combination of the staggered start to the full regimen and the inflammation caused by the surgery may have led to a spike or kept it artificially high.  We’ll see in a few weeks as the tests are done again.

I’m not scheduled for another CT scan until August.  Everyone seemed pretty confident that if the FulFiri worked once it would work again.  Now there is some doubt.  I wish I knew the answer, one way or the other.  It really is the waiting and wondering that gets the best of you isn’t it? I try to stay strong and positive, but there are certain decisions that have to be made based on a negative outcome.  I clearly can’t ignore those and must factor those into any decision matrix for me and the family.

I have a few business opportunities in front of me that I’m evaluating.  However, there is no way I can put an obligation on the family until we figure out this current situation.  It would be silly to have a capital outlay with future payments on the table if, well you know.  So we’ll have to see what the doctors say, do, and how my body responds.  In the meantime we just keep grinding, praying, and loving every day.  It reminds me of the quote that Master Oogway said in Kung Fu Panda, “Yesterday is history, tomorrow is a mystery, but today is a gift…that is why it’s called the present.”  Did I really just quote a cartoon? 

My Facebook feed just popped up a picture of my two littles laying in a bassinet from five years ago.  Josie was moving upstairs into a crib and Connor into a big boy bed (almost, but that is another story). Anyway it pushed a little nostalgia my way and memories of all the things that have happened in the last five years came pushing to the front.  What an absolute whirlwind.  Job changes for both Nita and me.  Kids schools, baseball, soccer, gymnastics, a cruise, fishing, hunting, surgeries, dental issues, and of course cancer.   I suppose everyone has a pretty big list changes every five years or so.  It just seems like the last year has been pretty drastic.  But, I’m a fighter and a believer, so we are where we are.

I’m still processing everything, but I tend to work fast when presented with a problem.  I suppose it was the old six sigma training from way back. I just start putting things on the board (virtual or real) and connecting dots where I can.  So I don’t know what is going to happen, but I do know this:  this weekend I’m going with an old friend to his ranch to have a camp out.  Connor and I will do some fishing and our families will have a great time.  Then Connor has a baseball camp next week at the Dell Diamond with the Round Rock express.  That should be pretty cool too.

Chris Kyle's funeral

I ran into my SEAL buddy on Friday and he mentioned something that was relevant.  He said to try to focus on the folks who are making it, not the ones who aren’t.  He told a story about one time they had to do a 50 meter underwater swim, without pushing off the side.  He said of course some guys were passing out and drowning, but other guys were making it.  So he chose to focus on the guys who were making the swim.  If they could do it, why couldn’t he?  So he did and he made it.  So I suppose it is time for me to focus on the ones who battle through this and make it.  If they can make it, so can I.  TeamMarco@austin.rr.com.