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.