Below is the conversation I got to have with the Livestrong leaders today (in video form) https://www.youtube.com/watch?v=YqRrVSGgLHc:
I don’t remember what it was like to be born…
but it can’t be much different than the day being told I had cancer felt. A
world that I lived in which felt relatively safe and quiet and it changed very
very quickly with unfamiliar noises and lights. Something shocking comes into life,
leaves you crying, confused and looking for a hand to hold… And when the birth
process goes right, when it’s a good day, you find that hand quickly and hold
on for dear life.
I was a kid who’d never called in sick to work in
his entire career. I’d missed 5 days of school from kindergarten to college
because of the chicken pox. Then while in the middle of a work birthday lunch I woke up in an ambulance where medical staff and my coworkers
were standing over me telling me I’d had a grand mal seizure and we were headed
to the emergency room… (I’ve apologized a few times for ruining her birthday).

CAT scan, MRI, this doctor, that doctor, admission… it was
all just a blur but enough to where the very first thing when I was told I had
something going on my brain, possibly a tumor, I ripped the IV out, put on my
jacket and started walking out. Coincidentally, the ambulance guy was walking
in as I walked out and stated “well you look better than the last time I saw
you”. I was walking through the parking lot when my friend Troy who was showing
up was walking in and said “what are you doing?,” and I said I was leaving, he
redirected me back in when he found out my checking out was less than valid.

This was just a couple of months after I turned 30… and I
couldn’t help but think “man life goes down hill fast after you turn 30.” There
was no holiday attached to that weekend but because it started on a Friday
afternoon the biopsy wouldn’t be till Monday morning… and I learned a whole new
definition to “long weekend.” I am a guy who jokes around a lot so when the
doctor when he showed me on the MRI that it was possibly a brain tumor, I told him to rub some dirt in
it. He looked at me, looked back at the screen, looked back at me, looked back
at the screen and said, “and if you look here…”
The last thing I’d say to him before he would do the biopsy was “I’m
going to give you a piece of my mind.” My friends following my queue of dealing
with stress with humor would take some good shots about how this was “rust from
lack of use,” “that I’d proved them all wrong, I did have a brain” and perhaps my favorite in
response to the fact that I’d been moaning about being officially old since I
was 30, someone saying, “only the good die young, you’re going to live
forever.” Whether the hospital staff was impressed or depressed by my anxiety
coming from sitting in a hospital room, they gave me permission to run on the
hospital grounds with a friend the night before the biopsy. This time the IV
was still in there and the simple truth is I snuck off and got an 8 mile run in
because I had to get out there before the biopsy the next morning.

The biopsy that was supposed to take a couple of days took
almost 3 weeks… and I’d say the suspense was killing me but if something was
killing me, it probably wasn’t the suspense. The jokes kept coming as I read the pamphlet
from the neurosurgeon about functions of the left temporal lobe… it could
affect memory and language skills and a few people requested that we put in a
mute button. It could affect sexuality and so I thought it was a good incentive
for people of both genders to be excited… but be warned I’m not any good at
being big spoon.
But the simple truth is that while those jokes made me smile then and
make me smile now and they were probably a better coping mechanism than hitting
the bottle would have been… they hid the fact I was denial. An old friend Nicole who
is a doctor was coming to check out Austin coincidentally around the time this
all started. I had a driving restriction so she took me to the appointment
where they’d remove the biopsy staples… and where we’d do follow up seizure
scans. There I would hear that I had
diffuse astrocytoma, a rare brain cancer that has
no known dietary, lifestyle, genetic or environmental components. As I made one
more joke about how this prove I a total
headcase she pointed out something that most people had missed since they were
laughing at the jokes, “she said, you don’t have a positive attitude, you have a casual
attitude.”
By the kindness of the universe, the very next day, someone
from my running group, Andy Stewart, a friend of this funny looking guy named
Doug Ulman told me about Livestrong. I would make the call while he was there.
There would be some questions, some suggestions and I was both grateful and
annoyed with the navigator on the phone. They were talking about psychosocial
things and emotional things and family and caretakers and blah blah blah. Boy
were these guys missing the obvious, how had they missed the memo that the only
thing that mattered about cancer was dealing with the medical stuff and the
bills?

This was shortly before Thanksgiving but the day before the
holiday, something arrived that I will always be grateful for, the Livestrong
guide book. I would spend a lot of that holiday weekend reading that book for
tips, for clues and obviously for the cure to cancer because that had to be in
there somewhere. But somewhere out of all the things that were in there, the
simple, elegant and beautiful livestrong mantra shouted at me, unity is
strength, knowledge is power and attitude is everything. Perhaps because it was
an echo of the casual/positive attitude remark… perhaps because it was finally
time to wake up and realize oh yeah I have fucking brain cancer and we’ve gotta
figure out a way to kick it’s ass.
I was already training for the Livestrong marathon and while I had
originally asked for a refund, I said no, I’m running this thing. With guidance
from the navigation center and friends, every single one of my doctors changed.
This had started in the ER and it was just random draw and while to each his
own, I wanted a team that was about action and the calls started and I would
find a neuropsychologist who realized I cared just as much about preserving
brain function as I did about the ability to keep breathing, I found an
oncologist, a neurologist, a physical therapist, a neuro surgeon who were all
athletes, all runners who knew that continuing to train was probably just as good for my brain, my heart, my soul
as anything they could possibly do. One of the assistants finally relaxed
enough to joke, “well maybe what’s least stable about your brain is how much
you’re running.” There was times they had to make me take a few days off
running because of the risks like after my wada test where they put parts of
my brain to sleep to see how risky the surgery might be. They went in through
my groin wound it all the way up to my brain, proving what we’ve always known,
that men’s groins are connected to their brains, it takes less than seconds for
them to communicate and we know which one puts the other one to sleep. I had to
stop running for a few days and when I got back they wanted me running next to
someone and not so hard so I ran next to a football guy we call Big from the
workouts and I told him that if I suddenly collapsed, he’d have to call 911 and
put pressure on my groin. With a smile on his face, he said you know if to save
your life, I have to put pressure on your groin, you’re probably going to die right?
I put off the brain cancer surgery for a few weeks after all the
tests were done and ran the Livestrong marathon in Boston Qualifying time,
still my fastest one cause I’ve ever done if they are going to slice your brain
open you don’t slack off and it helped that there were many good friends
including one of my doctors cheering along the course. And while if life ended
on athletic victories alone, we could say that’s a happy story… let’s just say
that I got some things horribly wrong. The person I was married to at the time,
the Livestrong navigation center had suggested that I do some things, most of
which I did not do. They suggested I go to counseling, that Kiana attend
counseling since obviously my scar is fairly visible, that I talk to someone
else who had been thorough the same diagnosis. Stacey Conley of the Austin
marathon thought I should join the Livestrong survivor team which I blew off
very quickly because this was all before the cancer surgery so how could anyone
call me a survivor?
The surgery occurred as successfully as possible. But then
my wife left… I fell apart… And somehow the navigator called as a check up and
I signed up for Livestrong’s cancer and relationships class, cancer and
parenting class, the survivor class. There would be simple things I’d missed
like “don’t tell your child that cancer is a booboo” since they use that word
for everyday things. The survival class was all men so I could still pretend to
be manly while being a little more forthright about the emotions that come with
it all. And perhaps, a basic truth of life that I’d somehow managed to miss
until the cancer and relationship class, you have to work on the relationships
you want to keep.
And that attitude I learned from Livestrong is my
everything. I thought the mantra that attitude is everything was wishful
thinking, a silly mantra of comfort in denial of reality. But 3 and a half
years into this journey, I’m not sure anything in my life is more true. Because
none of us like the idea of dying but there have been people who I’ve met
through Livestrong who die from cancer with a better attitude than many people
live with from day to day. There have been times where I woke up in an
ambulance again, where the shocks were apparent and I was again just looking
for a hand to hold. There have been times I was over eager and over read a
report where I thought maybe cancer was gone. But it wasn’t and I was
disappointed but friends from Livestrong reminded me that hey if it’s stable,
the days above ground are great ones. Statistically speaking, I’m not likely to make
40. But as my old math teacher used to say, statistics are like bikinis, what
they reveal is interesting but what they conceal is vital. Statistics can’t
show attitude and the friends I’ve made through Livestrong are even better than
great bikinis.


So while I’m a long way from where I should be, I am much much
further than where I could have been without the people Livestrong is made of.
They pointed me in the right directions towards great doctors. But somewhere
near as important they pointed me to daily cures. A friend from Livestrong Chris taught me how to ride a bicycle to prepare for the Livestrong ride… most of my
time with cancer I haven’t been allowed to drive because of seizures and this
bike became my car. I’ve done 3 Livestrong rides since then, each of them
taking the 100 mile option since besides being a marathoner, I also wanted to
be a centurion. Just as importantly, not long after I learned to ride, I taught
my daughter how to do it and we still do it together.
And
while keeping it age appropriate, my daughter has been with me for parts of my
medical appointments from MRI’s to neuro oncological ones… she attended the
counseling Livestrong pointed me to, Wonders and Worries, we even danced at
their ball. And this summer she will be attending Camp Kesem.
And
I’d say following in her father’s foot steps, except we did it side by side,
this year Kiana did her first 5k with Team Livestrong. I’ve raised money for my
marathons and centuries even doing things like shave my legs for these
centuries as an incentive to distract from how bad I look with such fitted
clothes. And somehow in the Paramount
5k, in just over 36 minutes, she raised over a $1000 for our team which is more
than I’ve raised for most of my marathons and centuries so thanks for making me
look bad kid.

I’ve continued to meet people through Livestrong like Steve
who even from far away gives me some good parenting guidance while dealing with
the disease, like Mary who they connected me through Imerman Angels and who I’m
still in contact with because she was one of the few people who also shared the
same diagnosis, like Matt who with lung cancer still works out with all his
heart, people like Sean who ran the marathon course on his own since colon
cancer treatment would not allow him to do it on the official race day. That’s
how he dealt with as he called it the bug up his ass. I could tell you about
Linda who says I should propose with a livestrong ring… I can keep going on and
on and on but the simple truth is that it is the diversity of that unity and the depth
of it that makes it so powerful, so strong. The fundraising done here allows the work.
Just as if not more importantly, what you do, who you are, creates both
information and inspiration to deal with cancer in the here and the now.

This is why I’ve done many races since then including the
Boston Marathon with team Livestrong. Even when I’m not officially on it, I
think of it while doing things like winning a marathon behind a stroller in
Beaumont Texas. This year I returned and won the half and jumped for joy. I got
the privilege of being part of the Spartan Charity challenge where my team took
home the top prize of $2500 to the charity of my choice and it came to
Livestrong. But whether it’s pushing the
system with medical treatment or on the road, whether it’s dealing with the
messes of obstacle races or the ones that you get from cancer, there is one
thing that has been a constant.
I started by saying that getting cancer was like being born where you
cry and need a hand to hold. But as we get older, sometimes the hand holding is
just to cross the street, or to comfort you in a moment of weakness, a squeeze
just to share a special moment, or to be held up together in a moment of triumph. But
the constant has been that since I put it on, and it is still the original one,
there is a band that sits on my wrist, a Livestrong band. And the powerful
knowledge that has come from that reminder, the attitude that comes from
uniting that strength, will always be there every time I get privilege of
having my hand held. The first hand I held was the one that had given me birth.
The band on my wrist represents what I hope you will all walk out here doing…
holding hands while living strong.
I read your blog pretty regularly. I had an oligodendroglioma in the left temporal lobe. It was removed 16 years ago and I am still fine. Please never forget that is entirely possible.
ReplyDeleteYou are doing great things with your life - your parenting, your raising awareness and money for this cause!
I am older than you - was 46 at the time of diagnosis, and my kids are grown, but I suspect we all have some concerns and issues in common.
Unlike you, I had never been particularly athletic before this. But I have discovered bicycling and have ridden lots and lots of century rides - even have ridden from coast to coast. I believe my diagnosis inspired me to use my time in a way that I never would have managed to do before, and I am delighted with that side effect!
If you ever want one more person with some thoughts on this tough subject, feel free to contact me. I can be found at whsbike at g mail dot com.
The name I sign this comment with refers to an event I am training for. Who'd have thought???