Category Archives: Leukemia

Racing for Cure

Racing for Cure

Please read my other Hub Running for a Cure.

I must apologize to everyone with regard to the link that I placed on my earlier hub. It was an old link that had not been updated. You will find the new link below that will direct you to my hubby’s race for a cure site.

My hubby is running his 3rd Marathon this year this SUNDAY, October 25th. He hopes to do better on his time, but most of all, he hopes to raise a lot of money to help find a cure for Leukemia and Lymphoma. His goal is to raise $3000. We have had friends die from these diseases and friends who have survived. And I am certain you have had friends who have been touched by these diseases. We want to see a cure where no one has to die. So, please, give a donation. We appreciate all the help you can give.

The Facemask

The Facemask

The Road to Montauk

Facemask

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It was 6:45am on February 10, 2008 when I was standing in
the parking lot of the Suffolk County Police Headquarters in Yaphank wearing a
black facemask and metal-soled shoes.
As I was applying easy glide to the area around my eyes, the only visible
area of my face with the mask on, I used my other hand to pull down the front
of my mask so that I may sip a very unsatisfying cup of coffee. The wind blew and I had to duck down
beside a car to prevent the coffee from blowing out of the cup and onto my
clothing. While crouching beside
the car I spotted my CO2 canister that had fallen out of my pocket so I picked
it up and then noticed the smell of horse stables, which was weird.

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I had joined The Team In Training, an endurance sports
program that offers coaching and training to all participants for triathlons,
half marathons, marathons, and 100-mile cycling events in exchange for a
commitment to fundraise for the Leukemia and Lymphoma Society. The Suffolk Team In Training Coach is a
member of the Suffolk Police and our practices began in Yaphank.

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The Team in Training originated in New York City in 1988
when a man named Bruce Cleland discovered that his two-year old daughter had
leukemia. He came up with the idea
to inspire some people to run the New York City Marathon for a reason more than
just personal accomplishment.
Bruce Cleland offered to provide coaching to participants who agreed to
attempt to raise money for the Leukemia Society of America, which was later
renamed The Leukemia and Lymphoma Society. Their goal was to raise $150,000 during that training season
and they exceeded their expectations tremendously. Thirty-seven people raised approximately $320,000 for
research on finding a cure for blood cancers.

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Today there are 39,000 people being trained for an event for
the Team in Training. When I
received a postcard in the mail from them, I remembered that my friend Jannine
had been a participant one season for the Montauk Century Ride, a 100-mile
cycling event starting in Babylon and ending in Montauk. Her enthusiasm about the organization
and the event during that season was impressive, and then I glanced up at my
refrigerator. Held under a magnet
was a picture I had taken of my Aunt Margie in Martha’s Vineyard one
summer. She invited me to go
vacation there for a few days and one day we decided to ride bicycles into
town. That ride turned into
eighteen miles around the island and the picture of her was one that I took in
the middle of a beautiful bridge, of course, as she was riding a bicycle. My Aunt Margie passed away on Mother’s
Day in 2000 after a vigorous fight against cancer. It was at that moment that I decided to join The Team in
Training.

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I spoke to Jannine about it before I went to an
informational meeting at the public library. She still had nothing but glowing reviews of her experience,
and pushed me in the direction of cycling.

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I went to the meeting and a young, vivacious woman spoke
about all of the events she has completed and how people who have never done an
athletic thing in their life end up running marathons for The Team in
Training. She then revealed that
she had leukemia and was in remission, and that she had completed the Disney
Marathon earlier in the month.

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I did not need much convincing to sign up since I was
looking forward to getting back into organized athletic teams, but her story
certainly alleviated any doubt that I might have had. I felt that it was an excellent opportunity to do what I
loved the most and succeeded at most of my life by participating in a sport,
and I liked the idea of making a major commitment to contribute to society
personally, physically, and financially.

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I needed to raise $1,900 for the Montauk Century Ride in
four months as a TNT standard goal.
Once registered, the Leukemia and Lymphoma Society sent you a password
for your fundraising website and a folder full of ideas of how to raise
money. Apparently writing letters
proved to be the most successful, so I wrote some letters and put the body of
the letter on my website.

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Writing my letter encouraged me to immerse myself in the
topic of Leukemia and Lymphoma. As
you may or may not know, blood cancers are the second most fatal form of
cancer, second only to lung cancer.
Someone new is diagnosed with a blood cancer every five minutes. Every ten minutes, another child or
adult loses the fight. Leukemia is
the number one cause of cancer death for children and the survival rate is only
32.4%.

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The Team in Training strives to fundraise for research for
blood cancers and has made some significant accomplishments in the past twenty
years. In 1987, there was $6.4
million dollars in research grants awarded with a cumulative total of $50
million dollars. This season the
cyclists for the Team in Training raised $7.5 million dollars for the Leukemia
and Lymphoma Society. As far as
therapeutic advances regarding Chronic Myelogenous Leukemia, in 1987 the
five-year survival rate was less than 55%. As of 2007 with the use of the targeted drug Gleevac, the
five-year survival rate is 95% with high quality life. For Non-Hodgkin Lymphoma, the five-year
survival rate in 1987 was 52% and as of 2007, the drug Rituxan has increased
five-year survival to 63%, with dramatic improvements in patients’ quality of
life. In 1987 the survival rate
for Myeloma was 12% and as of 2007 it has almost tripled because of drugs such
as Revlamid and Velcade.

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Patient services are also supported through LLS. In 1987, a free national call center
for patients and caregivers was not available. In the year 2007, the Information Resource Center responded
to 74,325 inquiries. LLS also
provided financial assistance to 16,958 patients in 2007.

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This all may seem like a blend of numbers and propaganda to
some after a while, but through my experience in this one season, I have seen
results without even trying. An
administrator I work with casually brought up the fundraising I was doing at
work one day as we sat at a conference on a lunch break. I had sent out an email to everyone in
the building but was unaware that she had taken any notice to it. She was diagnosed with Non-Hodgkins
Lymphoma within the past five years after feeling fatigued for some time and
discovering lumps in three different areas of her body. After getting a second, third, and
finally fourth opinion on her condition, the last doctor diagnosed the blood
cancer. The thing that stood out
the most about her story was a phone call from a young, vibrant man named
Jason. She couldn’t remember his
last name at the moment, but she explained how he had called her on the phone
after learning of her diagnosis and had really saved her life. He was a survivor, and called to reach
out to her now that she was diagnosed with cancer. She was not specific regarding the details of the
conversation, but it was clear that the phone call from Jason had really saved
her in some way.

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This conversation was just a shred of the glimpses of
people’s lives and humanity that I experienced during a season with the
cyclists. Everyone came from a
different place with a different story or connection to someone who had
suffered and was there every Sunday morning at Yaphank Police Headquarters at
8am to train in the freezing cold in February.

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So then there is the training. We were to meet at Police Headquarters at 8am with our
bikes, water bottles, and layered clothing for the wind and cold in February
every Sunday morning. Jannine
insisted that I use her bike for the ride, and exclaimed that it had been
sitting in the basement since she had rode the Montauk Century Ride a few years
ago. It was a Specialized road
bike, and despite the small pile of brick rubble that sat on the bicycle seat
in the basement, it was still a great bike. She was pregnant and due in June so her participation was
not going to happen. However, I’d
like to mention that she and some other friends from the year she rode are
riding The Montauk Century Ride 2009.

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I took the bike to Babylon Bike Shop where Jannine bought it
and they tuned it up for the first practice ride in February. However, the weather was heavy rain and
wind for the first ride and the Team in Training went along with their training
alternative and arranged a spin class for Sunday morning. Fitness Incentive in Babylon village
allows Team in Training members to participate in spin class there for free
when the weather does not hold out.
So that Sunday I went to spin at 11am with the rest of the team. However, we would not always be so
lucky.

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The following Sunday we met in Yaphank and I had bundled up
in all sorts of athletic clothing with a winter jacket outside shell. I remember laughing on the kitchen
floor when Jannine showed me the facemask.

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I ended up wearing that facemask every Sunday until the end
of April.

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I had always been athletic, so our first ride of fifteen
miles seemed feasible. Within the
first mile someone crashed into a guardrail in front of me and it took some
maneuvering to avoid. We went
north on Yaphank Avenue and then took a right on Main Street. While trying to stay in the shoulder,
you had to also avoid rough road, potholes, sand, gravel, grates, and tree
branches. There happened to be
some protruding tree branches with a car approaching from the rear at the same
time. So your choice was either to
get hit by the car or whipped in the face by tree branches. A guy in front of me tried to seek an
alternative and ended up in a smash up in the guardrail. He was o.k., but it looked like it
definitely hurt. Bike safety is no
joke; especially with people who aren’t as athletic, coordinated, or careful.

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My worst memory was not being able to feel my hands and just
trying to pedal harder to warm up my body. I shoved one gloved hand underneath my winter jacket for
thirty seconds at a time and alternated some mornings. Our coach, George, was notorious for
secretly tacking on miles to the original training schedule so after a forty
mile ride, some of the riders who purchased digital clocks to keep track of the
mileage would inform us that we actually did forty seven miles.

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Despite the frigid temperatures and the deceit, I began to
look forward to the rides. I would
lay my clothing out the night before, fill my water bottles, and place my newly
purchased electrolytes of choice into the pockets of my jacket and bento box (a
small attachable compartment on the frame of the bicycle). GU is actually the brand of choice
these days along with the flavor expresso love. I also like CLIF gels
and their little gummy squares that I desperately needed on the rolling hills
of Montauk. Power Bar products
just do not taste very good to me and are unfortunately the most common found
in stores. There are also
Sharkies, a gummy shark electrolyte product that aren’t too bad either.

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Before each practice we had a miracle moment or inspiration
to ride for that day. After our
first spin class at Fitness Incentive, our fearless leader Elizabeth Harman,
coordinator for LLS Team Long Island, delivered a short speech about a little
girl, Katie McBride, who had just been placed in intensive care because of
complications from her blood cancer.
Elizabeth sobbed first, and then was able to muster out the latest
information on our patient hero.
Elizabeth is a survivor of a blood cancer like many other participants
and staff members.

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The following Sunday we heard that Katie’s condition was not
improving and the first mile of our ride we rode as a “silent mile.” A few days later, Katie had gone to
heaven.

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I never asked other people why they chose to join the team
because I felt like it may be too personal. However, I found that many asked me and I revealed that my
aunt had succumbed to cancer, a student in my ninth grade class is in
remission, and a childhood friend is also in remission as of March 2007. There was a team member that I spoke to
often on the practice rides and he would often refer to his wife who was
obviously suffering from cancer.
“You drinking Figi water?
My wife likes that too- she said it is the easiest on her stomach after
chemo.”

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It was difficult to get everyone’s name right because we
were so bundled up all of the time including helmets and sunglasses but when
your on the road for fifty miles, you end up talking about all kinds of
things. We even passed a bison
farm out East one day along with Llamas, wild turkey, and some exotic
birds. Who knew!

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The most common question people asked me at some point in
the conversation was, “You doing Tahoe?”
In June of every season, the Team in Training participants who raise
$4,200 dollars are flown to Lake Tahoe, Nevada to ride America’s Most Beautiful
Bike Ride, a 100- mile ride around Lake Tahoe. I did not plan on riding that one, but everyone on the
Suffolk team kept encouraging me to do it. It was known as a harder, hilly ride and one of Jannine’s
friends did it a few years ago.
When I ran into him, I said, “Hey, you did Tahoe, right?” He replied, “No, Tahoe did me.” It
was a thought for the moment, but I did not really consider it until the end.

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Fast forward to the Montauk Century Ride. I blinked and it was May 18th,
6:30am and I was standing in the Babylon Train Station Parking lot wearing
spandex bicycling pants with a padded butt, cycling shoes with clips on the
soles, a Team in Training Long Island jersey, a helmet (never would have
thought that in a million years), and cycling shades. What I was about to experience in the next hundred miles was
life changing, and what I experienced in the miles underneath the facemask were
even more moving, even if the circulation in my hands was not.

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The Road To Montauk

The Road To Montauk

The Road To Montauk

The Road To Montauk

 

It was 6:30am on May 18th and I was standing in the Babylon
Train Station Parking lot with my spandex-padded butt-cycling shorts, helmet,
cycling shoes, Team In Training Long Island cycling jersey, and one hundred
miles ahead of me for the Montauk Century Ride.

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My number was 2513. 
I received it in the mail from the Five Borough Bike Club a few days
earlier.  I thought it was a little
spiritual, being that my number in high school was #2 and my Aunt Margie died
on 5/13.  I also had a bell tied to
a red ribbon hanging from my handlebars that symbolized Pete Macaluso, a former
rider for Team in Training Long Island and a dear friend to many of my
teammates.  He passed away last
year, and he was always known to wear a Santa hat to all of the rides when he
could no longer do the rides and came to cheer everyone on.

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We took off and before I knew it I was at Corey Beach at the
twenty-one mile rest stop eating a fruit and nut bar (Nutrigrain, and good
too).  I hopped back on and rode
all the way to Westhampton Beach to the next rest stop on Library Avenue.  There I met my family and my two little
nephews, the older one aged four. 
There were riders everywhere and he had many questions. 
“But…but…where are the pedals?” 
I explained that they were different pedals that attached to the bottom
of my shoes to make it easier to ride. 
I shortly had to take off again, and waved goodbye before my adrenaline
went down. 

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And then there was Dune Road.  Ah, Dune Road. 
I passed the old Drift Inn and felt a weird pain in my right knee.  Now I have to mention that I am pretty
tough, and rarely am bothered by a sports injury.  When I was ten, I attempted to ride my BMX down a dirt hill
in the woods that was two stories high and left over from some halted
construction.  I flipped over the
handlebars and blacked out and woke up with blood everywhere as one of the
neighborhood boys carried me to my house all worried.

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But this, this sudden knee pain, definitely hurt. 
Somewhere in Southampton I finally admitted to another rider, Alisa,
that I had a potential problem.  I
described it as we rode, and she reluctantly replied, “I’ve heard of
that.”  When we got to the Water
Mill stop, I took Aleve and hoped for the best.  My four-year old nephew and crew arrived shortly after I did
and I gave him a Ba-nola bar. 
“Aunt Alanna, you made it here before us but at the next stop, we may
get there first.  Or you will get
there first, but we don’t know, it could be either one of us!”  A competitor at heart; I trained him
well.

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He was right; I rode down Further Lane in East Hampton
besides a picturesque scene and even saw cows along the way.  Suddenly, I heard an eruption of cheers
and applause.  It was the Team in
Training’s last cheering section, and there was my nephew running up and down
the side of the road cheering and jumping.  I pulled over quickly to say goodbye to them as they were
turning back after that stop, and he handed me some flowers.  “Here Aunt Alanna, I picked these for
you!”

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Fifteen miles to Montauk after that was a breeze. 
The knee was numbed, I was making good time, I hit Bluff Road, and then,
I got a flat.  Of course it had to
be the back tire, the harder tire to change because of the gears, and I
mentally became discouraged. 

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I had also lost the rest of the Team in Training folks
because I stayed a little longer with my family in Water Mill.  Well, I lost the A Team, the fast
riders, and the B team was long behind them.  I got the wheel off of the bike but the tire was not budging
from the rim as I wrestled it with a tire lever.  Many people passed me, and I understand that being so close
to the end and wanting to finish. 
Unfortunately I had to wait twenty-five minutes for the next TNT Long
Island rider to finally stop and help me. 
A young girl actually stopped who wasn’t with the team, but she couldn’t
get the tire off either.  Finally,
Julian, a team member, said, “I know you!” and he pulled over to help me change
the flat.  Then the rest of the
riders eventually came by including Bobby, whom we like to call “Schmoopie,”
and he reprimanded me. 

“You see, Alanna?  God punished you and humbled you for leaving me in the dust.”

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Before I knew it we were tackling the rolling hills in
Montauk.  They were actually not
that bad with the help of some electrolytes, and we made it in before the
rain. 

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Two weeks later, I flew to Tahoe.  I was apprehensive about going, but I made the money
fundraising and was urged by many teammates to go.  Throughout the training season I heard them talk of it and
heard words like, “switchbacks” and “Spooner,” but I never really paid attention.  I am glad that I didn’t, because I
learned that the more you know about the Tahoe ride, the more dread and fear
you’ll have in the time leading up to it. 
It was only one week away, and I began to panic.  I had only done the training rides once
a week on Sunday, the minimal training schedule, and ignored the other
recommended workouts during the week. 
On the plane ride there, the team was sleeping, taking pictures of each
other sleeping with mouths open, and I, and my friend Alisa, were
nauseated.  She had never done
Tahoe either and had only done El Tour de Tucson, and we admitted our last
minute fear of what it was like. 

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George told us of the switchbacks that climbed the mountain
and Spooner Junction at mile eighty that was an average of an eight percent
incline…for eight miles. 

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We arrived in Reno in the afternoon on Friday and boarded a
charter bus to Stateline, Nevada where our hotel was located.  As we approached the lake, George
pointed out that we were driving down the road that would be on the course at
approximately mile ninety-one and there would be some rolling hills before the
finish line.  We would also go
through Cave Rock Tunnel at mile ninety-three, a seventy-five yard tunnel on
the precipice of Lake Tahoe, and it was a Team in Training tradition to yell,
“GO TEAM!” as you made your way through to the other side.  Alisa and I looked at each other and
still did not know how to feel about that stretch of the course, or any part of
the course.  But then, there it
was- deep and fresh as the eye could see, the most beautiful lake I have ever
seen swaying serenely below the white capped mountains.  Using the word “beautiful” just does
not do it the justice it deserves and I have not figured out another
replacement just yet.  I don’t know
if it is communicable unless you are standing there breathing in the cool
breezes that occasionally rise up from the lake. 

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The bus hummed through the tunnel and voices erupted, “GO
TEAM!”

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We arrived at Harvey’s Hotel and Casino across the street
from Harrah’s and quickly checked in so that we could go pick up our
bikes. 

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Everyone was really tired from the flight and the altitude
affected most of us a bit but I had prepared a little by taking an aspirin
every day for a week prior to the trip. 
We were thirty-seven, a smaller group from the Montauk ride (about
sixty-something), and were each assigned a roommate for the weekend.  I had never met Naomi, my roommate,
mainly because she trained with the Nassau group.  She was an accountant and was known to be an excellent
rider.  She was much shorter than
me and we laughed at how small her bike appeared compared to mine.  We quickly had to run down to the back
parking lot to get our bikes off of the truck that shipped them out there and
make sure there was no damage during the trip.  After I brought my bike back upstairs, we went out to a
little steakhouse in town.  Shortly
thereafter, I passed out sleeping.

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At 7:30am we had to be across the street at another hotel to
pick up our packets and numbers for America’s Most Beautiful Bike Ride
2008.  Immediately after that we
were to meet in the back parking lot for a practice ride to make sure
everything was working properly.  About
a mile into the ride, I felt that damn knee thing again.  Panic!  How was I going to ride 100 miles the next day through the
mountains?  I had rested it since
Montauk which was two weeks prior and took Advil a couple of times.  I went running on that Wednesday before
the travel day, due to the fact that I got nervous about not riding since
Montauk or doing anything in preparation for the ride.  Our bikes were shipped right after
Montauk so the only choice was the gym and the weather was just too nice for
that nonsense.  However, when I did
go running I did not feel a thing. 
Only on the bike did this pain surface and unfortunately, it made me really nervous.

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After the ride I walked through the little town and bought
CO2 cartridges (to pump up a flat) since you were not allowed to travel with
them as it is a $30,000 dollar fine. 
I also picked up some bike stuff at the two bike shops and them ran into
CaryLarry, or Cary and Larry, mentors for the team, and they twisted my arm to
go get sushi at The Naked Fish in town. 
I had a safe lunch, including a miso soup and salmon steak, and then we
returned to the hotel.  This was
when the fun started.  The Team in
Training had a pasta party at 4pm for all of the national chapters at a
ballroom in Harrah’s.  We were to
meet in the lobby with our Montauk tee-shirts to be united that read, “Brake
the Cycle” referring to the fight against cancer.

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As we rode up the escalator, I started to hear cheering and
clapping.  Not just a faint crowd,
but about seventy-five people surrounding the opening doors to the
ballroom.  We entered into a huge
ballroom past an ice sculpture that read, “Team in Training: 1988-2008
Twenty Years of Saving Lives.  We had reserved tables right in the
front and each chapter from each state was introduced.  Then there were guest speakers, and the
announcement of the top three fundraisers for this season nationwide.  Then a man named Rick Stark was
introduced, and he was a Team in Training coach/mentor for the Northern Ohio
Chapter.  He is an economics
professor, and threatened to present a three-hour economics lecture if we did
not protest.  I noticed something
was abnormal about his cheek, but thought it was maybe nothing. 

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The point of his speech was about appreciating time here on
earth and in life.  How do you
spend your time?  Do you work all
day, come home, eat dinner, and then continue to work throughout the
night?  He mentioned that the
things that you do the most are what is important to you and what you consider
a priority.  If it is the case that
you work all day and night, then that is
what is most important to you.  He
recollected that when he read his speech to his wife she began to cry.  When he asked what was wrong, she
stated, “That used to be you.”  He
emphasized that everyone needs to be more conscious of how they spend their
time, and if in fact that is really what they want to be doing. 
Spend time with your family, do things that you enjoy doing. 
Life is too short to have time fly by without contributing to life what you
want to contribute. 

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In the midst of his speech, he also casually mentioned that
he is a survivor and has had numerous surgeries, one of which was four weeks
ago.  Doctors had to take a piece
of his hip bone and put it into his jaw when they discover that his jaw bone
was dying due to the relentless chemotherapy treatments he has been
receiving.  He left us with his
Chapter yelling O-H and I-O at the top of their lungs on cue and then the
director of the race spoke about the safety factors to consider for Tahoe the
next day.  He is also a radio VJ,
and did the weather report for Lake Tahoe in his radio commercial voice.  It was over, and Alisa and I were ready
to throw up.

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Later that night Larry looked at my clips on my shoes and
the seat height to make sure that there were no obvious blunders that may be
causing a knee injury.  I saw Cary
in the hall, and he revealed that some team members were going to the lounge on
the 19th floor for a bit. 
Naomi said I was brave, but I did not plan on staying too long or
drinking any cocktails.  Pete
Macaluso’s son Eric was up there as well and in Tahoe to ride the next day, and
he felt a little French red wine would help me sleep.  John and Mary, TNT Nassau riders, assured me that Tahoe was
going to be a piece of cake.  Bee
Bee, another rider, leaned over her glass of wine and whispered, “I wouldn’t
say it is a piece of cake, but you’ll be
alright.  The switchbacks are hard,
but do-able.  Spooner is hard
because it is at the end when you are exhausted.”  After two glasses and a bite of a delectable piece of
chocolate cake, I hit the hay. 
Naomi and I had a quick conversation that she would not remember because
she was sleeping and it was my fear and I, all alone for the night.

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Naomi was up before me and we quickly got our gear on and
were waiting for an elevator by 5:35am. 
It took four elevators to open and have to pass us along because they
were all filled with bikers and finally we got down to the back parking lot and
filled our tires up with air.  I
had taken two Advil that morning and prayed to God to get me through it.

>

We lined up behind North Texas, one of the many Team in
Training chapters.  There were
1,900 riders from the team in training and approximately 3,000 riders
total.  It has become a tradition
that each chapter adhere a symbol of their chapter on their helmet, so I saw
some interesting helmets during the day. 
We took a more personal approach, and all thirty-seven of us had a
little Santa hat attached to the left side of our helmet in memory of Pete
Macaluso.  North Texas had a small
armadillo on the top of their helmet, and the Gulf Coast (Texas) had a Texas
star.  Minnesota had a Spam can,
Pittsburg had a miniature Heinz ketchup bottle, Hershey, Pennsylvania had a
Hershey kiss, the Sun Coast (Florida) had a sun, the Desert Mountain States had
a cactus, Michigan had a red flyer, Hollywood had the Hollywood sign, New
Jersey had a picture of the Garden State Parkway, Northern California had a
wine glass (plastic) and Georgia had a peach. 

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And we were off.

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