Don’t stop believing
I had my follow up visit with my surgeon from June 22 on
Tuesday. It was quite revealing. First, when he walked in he looked at me like
I was a ghost. Literally shaking his
head and smiling at me. I thanked him
for saving my life (gave him a book) and here is how he responded, “You know,
you never want to be memorable to a surgeon.
You want your procedure to be mundane, run of the mill, just routine
stuff. You sir, I will never forget as
long as I live.”
We talked a lot about the surgery and since I was
incapacitated during the procedure, I pressed for some details. Here is the real story. He said that when he went in and saw how full
of infection my abdomen was, he was already surprised that I had survived. Second, he knew that the procedure would not
be done all in one go. He didn’t think I
could survive the entire ordeal in one sitting, thus bringing me to ICU without
closing. He knew they would have to go
back in, but he wanted another set of eyes and hands in the OR with him. And, according to him, he wasn’t certain that
I would survive the first night anyway.
When he went in the second time and they cleaned everything
up and followed the newly formulated plan, he was still on the fence as to
whether or not I’d pull through. He
candidly stated that I was definitely not alone on this one. That I must have had something on my side
working for me. He even showed some of
his colleagues my scans and described the OR play by play and asked how they
would have handled the situation. Almost
unanimously they guessed that “the patient didn’t survive the procedure.” So my previously held notion that this was
nothing short of a miracle was solidified during this visit.
I am pleased that I have chosen to enjoy each moment and the
simple things in life and have used my newfound energy (more on that later) to
be more active with the kids. One of the
things that makes me happy is that my wife thanks me every day for fighting to
stay alive…for one more day. It is
pretty sweet. Although her patience is
wearing thin on this mucus thing I have going on in my nose.
The crickets are back in full force and it is affecting my
sleep as I try to clear my nose (so I can get oxygen into my body as I’m
sleeping) which in turn affects her sleep.
If I breath through my mouth, then the particulates in the air go into
my lungs (sans filter – yes, your nose is a filter) and I end up coughing a bit
more…which also keeps us both up. I’m
trying everything from humidifiers, Flonase, digging, saline nasal spray, to Vaseline
to loosen things up. By the way, too
much saline spray is the equivalent of drinking salt water and you will more
than likely gag.
Thursday night was the first time I was unable to sleep
through the night. Each nostril had
something deep in the sinus and no matter what I tried, could not free
them. I wonder if it is my lung capacity
and the inability to really send a forceful blow or they are just stuck. Eventually they will come out and I’ll have
clear nasal airways, but you have no idea (or maybe some of you sinus sufferers
do – minus the depleted lung capacity) how much this affects your ability to
sleep, talk, recline, etc. It is further exacerbated by wearing my reading
glasses with the pressure on my nose. It
is why sometimes I’m slow on the text responses and other phone things.
I decided to give Nita a break and let her sleep the rest of
the night, so I’m at the other end of the house writing this so she can
rest. The kids were up late last night
at the ballgame so they shouldn’t be down chirping, “Momma, momma, momma” for a
few more hours. I am determined to now
go see an ENT in case there is a proactive measure I can take. This is getting out of control. The upside is the sounds of the night in our
neighborhood are pretty cool. I heard a
couple of owls calling each other. That is
always fun. Update – If you are keeping
score at home I finally cleared both barrels at 6:15AM. Breathing through my nose is a luxury I no
longer take for granted.
So the ballgame! Yes,
one of the perks from Josephine’s baseball camp included tickets to a Round
Rock Express game. A few guys from the
parent club were down on assignment and they were fun to watch. Several friends ranging from just a couple of
years back to 25 years ago stopped by to say hello and meet the family. It was great.
Josie and Connor had a great time, but were a little disappointed when I
ran out of bullets and we had to leave just after the 7th inning
stretch...but they were quick to forgive. We all had a good time and the
Express came out on top. The seats
wreaked havoc on my back, but mercifully the cool front from a couple of days
ago made the ballpark perfect. There was a slight breeze and the temperatures
were in the mid to low 80s. Fantastic
summer baseball weather. Check off another
normal daddy function that I was unable to during the previous six months.
Skipping back to Saturday, we surprised the kids with a
Moviehouse and Eatery show. We took them
to the third installment of Despicable Me
– D3. When looking forward to the game just five days later, I was a bit
apprehensive. Our movie was at 2pm and
the temperature was 107. Other than
that, there was nothing really eventful.
Like our good doctors said, sometimes the mundane is good. But again, it was another daddy family outing
that had been impossible over the last six months.
Thursday was an eventful day. I received a call from the clinical therapies
group at MD Anderson. If you remember,
they were going to bring my case to a panel of stud trial oncologists and the panel
found a trial for me. I go up Wednesday
for testing to see if I fully qualify.
So far, I’m deficient only in hemoglobin (iron). And by deficient, my number is 9.9 and they
need me to be a 10, not a huge stretch. So
it looks like steak and spinach through the weekend. I am looking forward to this because with all
honesty, I feel myself sliding a bit. I
mean I can clearly do more than I could over the last few months, but not as
much as say a few weeks ago. Plus, the
CEA growth has me concerned that we need to get this rolling pretty quickly. Not to mention the active metastasis growth
in the liver and lungs. I can actually
feel pain in my liver now at times.
Lungs too, but that could be a number of things.
The slide and me being past my expiration date has me
thinking about bucket list items.
Josephine has been talking about baseball and hall of famers so much
lately it almost seems obvious. She’s
got books on Lou Gehrig, Jackie Robinson, and Babe Ruth. The whole family talks about our favorite
players at the dinner table. So,
Cooperstown and the baseball hall of fame, (hopefully) here we come. I am thinking of getting a couple of rounds
of the trial chemo in me to see how it affects me and also determine if I’m
able to fly or not. If those answers are
positive, I have enough airmiles to fly us to Albany, NY for about $45.00. Lodging in Cooperstown, NY in September
during the week shouldn’t be a huge issue
I am extremely optimistic for so many reasons, but none more
so than listed in the third paragraph.
Someone is looking out for me, has never let me down, nor do I expect
that He would do so now. It seems as
though I am still having to endure quite a bit, and that is okay. It’s worth it for all this family time. It also seems that just when I get a tiny bit
discouraged, something positive happens.
Even if it is just clearing a cricket booger. But mostly something bigger, like Connor and
Josephine helping me with a project; or watching Connor’s improvement on his
archery.
We are all so ready for football season, dove season, and
deer season this year. I think this
trial is going to get me through all of them, at least the latter two. I have often said that I appreciate each
moment and love my family fiercely! I
know the math and hold neither regrets nor expectations. When God decides it is time for me to come
home, then it is time. I will not be
upset or feel cheated, quite the opposite.
I have been given a gift that almost everyone else has been given, but with
the ability to see it in a different way.
I can’t explain why this is so comforting to me, other than acknowledging
that I know I am a walking miracle. I
was given a summer to do more active things with the family, and help my wife
with some household things. And when
these things are taken away, then given back…they are much bigger deals than
you originally thought.
Thanks to all of you who have been loyal readers throughout,
and to the new readers as well. I hope
these blogs help you, a friend, or a family member in some way. The book signing is August 18 at Balcones
Country Club. As I was re-reading it, it
reminded me of how far I have come since the first days. Man, I was clueless and didn’t know what to
expect. But I stayed positive and held
on to my faith in God. Sometimes that is
enough. God bless and have a great
weekend everyone. Teammarco.
