The Offical Blog of Road 2 A Cure

Our first day’s ride: well, it really wasn’t our first day’s ride.   Sit down and get a cup of coffee or something stronger–this will be a long first blog.  Many of you are wondering what is up with Road 2 A Cure and where we are.  So here it goes. It is catch-up time. 

Getting Ready for Departure

Saturday morning the 20^th of February found me racing to get ready for our departure.  Complete pandemonium, with friends and family all trying to pull together to get us on the road.  The  rain had broken and the sun was out.  The whole team worked like mad on very little sleep for weeks to get ready.  Special thanks to Sunny, Blanche, Mom, Aunt Alice, Gene from Moto Loco in Santa Barbara, Doug Raggio, Mary Anne and Rich Kendall, Darin Goodman, Troy Siemens, and the many other volunteers that made this event happen. Somehow things were going to work. 

The Kickoff

The kickoff  event was a blast.  The Victory and Big Purple looked amazing, thanks to Brandon, Dave and crew at 858 Graphics in San Diego. 

The food and beverages were donated by  U.S. Growers Cold Storage, Perricone Farms (best juice I have ever had), Jordanos, Sparkletts, Coca Cola, Pacific Beverage Company, GBL, and others.  A big thanks to Mark and the staff of Paradise Store for providing the venue and cooking up a storm!  Thank you also to Marco and Doghouse, who rocked the house. It was a hard moment as my adopted little brother Marco played the Jonny Cash version of “Hurt” for me as a send-off, a song that for me represents chemo and redemption.

  Our volunteers where stellar: Kristen, Jessica, and Steve Bardwil (Team Bardwil: you and Pam are in my heart always!), Sunny Oslin, Doug Raggio, Mary Anne Kendall and Family, Kathy Guidry and Family, Kris Hart and her team of volunteers, Ann Bennett, Steve and Karlene Ledbetter (Mom), Amber Patschull (Little Sister), Mike Healy (Dad), Nora Calaprice (Mom), and all the others that made this happen. Whew, what a mouthful of names!  We couldn’t have done this without all of you.  And  last but definitely not least a huge thanks to all our friends who came out to show us support. 

 At the end of the kickoff event, as I was making preparations to get on the bike for Leg 1, I was told the truck that makes up the pulling part of “Big Purple” (our truck and toy hauler support vehicle) blew a transmission on the way to our event.  Thanks to Doug and Jennifer for keeping this quiet so I could enjoy the day.   Good news to my mind, actually.  So how is this good news?, you might ask.   If something is going to break it is better that it is close to home.  Our sponsor, the Automatic Transmission Rebuilders Association (ATRA), got to show their “Peace of Mind” support promise early, and boy did they!   They rebuilt our transmission and radiators in two days.  I didn’t know billet  parts went inside transmissions–I thought people only put that stuff on the outside where it could be seen!  Big thanks to ATRA and Donnie Caccamise of DMC Transmissions.  They built a bullet-proof transmission for us–and faster than I thought possible.  Now we get to start off with a fresh transmission.   Andy Madison (my wheelman and videographer) and I stayed an extra day to help my courageous wife Jennifer get things in order a bit more for the departure and start to sort out the truck issues.  Apologies to those who wanted to ride to L.A. with us.  We left for Las Vegas two days behind schedule.  Luckily we had planned some extra days here for just such a contingency!   Having had chemotherapy two weeks before departure and working to get on the road on time was tough, and I was tired.  

Day 1 on the Bike

Confident that Jennifer and Big Purple where mere days behind us, Andy and I set off before dawn on Tuesday for Vegas knowing there was more to do, but we had miles to go and no way to make the riding season longer.  We packed video gear and an old laptop, and a week’s worth of clothes and meds in saddle bags (just in case), and cowboyed up.  As we crested San Marcos pass in Santa Barbara, CA, the sun was starting to blush the horizon and the fog parted enough to see the islands and the twinkling lights of sleepy Santa Barbara.  This is an especially beautiful spot this time of day.  It was going to be an amazing day’s ride.   As we neared the coast at Summerland, CA,  both the Purple Victory Vision that Victory was kind enough to loan me and Andy’s Bike were running great.  We rolled past the coast and we headed out for the desert.   Our efforts to get on the road started to tell on us before we reached Victorville, just a couple of hundred miles east.  I had to pull over on the side of the road, put my gloves on the ground for a pillow, and lay down in my riding gear in the full desert sun.  The price one pays for chemotherapy, I guess. 

 I only had a minute or two of rest as concerned drivers slowed down to make sure we were OK.  The next driver to come along stopped to admire the purple Victory.  He was a Victory rider himself.  Line Dog, good to meet you, and since you are following our blog now, chime in!  I’ll let him comment on our meeting, but it was cool to meet him and swap some stories.  The encounter woke me up and got me ready to push on.

  We moved out into the desert.  Still groggy, I got a couple of Redbulls and fuel in Barstow.  We got off the main road onto old Route 66 and rode for a while.  It looked like the road would reconnect with the highway way off in the distance.  You could see the two lines coming together.  But after riding some way on what resembled a collection of potholes connected by 60-year-old asphalt,  it came to a dead end.  I guess the mother road is too far gone in some places, but it felt good for a while to ride the road less traveled.   We stopped in Baker by the big thermometer for some more coffee and Redbull, fueled up, and headed to the state line, where we finally ran out of steam.  It had been a long day of not making much distance; but we have a long way to go and need to stay safe, so, only 60 miles outside Las Vegas, we called it a night. 

Day 2 on the Bike
We pulled into Arlen Ness Motorcycles, the Victory dealer in Las Vegas that was scheduled to put more parts on the Vision.  Jim and the rest of the team there were fantastic.  They put some lower wind deflectors, a CB/intercom, fog lights, highway pegs, and  checked Andy’s and my bikes for tire pressure and fluid levels.  A huge thanks to Arlen Ness Motorcycles of Las Vegas for all the help and support.  We hunkered down across the street at a hotel to get some emails and other work done. 

 Now for the bad news.  The F250 just wasn’t going to pull what we needed.  Try as we might, we could not lighten the load enough.  My brother Joe, a professional truck driver, flew in from Idaho to help Jennifer deal with the issues.  They rigged the transmission up with gauges and meters and went for another test run, but a stop at a scale showed there was no way to make it with our current truck for this expedition.  So, undaunted, Jennifer set out to find us a new truck.  We shot some footage of the bike being prepped, then went to  get emails and attend to the business of the tour.

Day 3 on the Bike

We woke up with some trepidation for the state of our moving home and production studio.  During the evening we discovered that my venerable laptop was no replacement for the desktop PC we used for editing in the truck.  We could not edit or upload our footage, but we could shoot.  So shoot we did.  Off to Arlen Ness Motorcycles of Las Vegas where their rock-solid Victory technicians had installed even more buttons and switches for this poor old biker to get to know.  No seriously, this bike is amazing. So far I have led a 10k run as pace vehicle, run LA freeways, enjoyed curvy mountain roads, and cruised long stretches of straight and seemingly endless deserts  on this vehicle.  It handles all with ease.  The Vision seemed intimidating and huge when I picked it up at the airport, but within minutes it was like an old friend.  It has a low center of gravity, a responsive suspension,  comfortable riding position, and plenty of power when you need it.  It sort of defies every aspect of its large looks.  I could not be happier setting out on a 42,000 mile journey than with a Vision under me.  We shot an interview with Jim Morris from the Victory dealer,  added yet more luggage to our loaded bikes, picked up rain gear that had been shipped to us by Royal Riding in Ventura (thank you, Kris), and headed to our next interview at the home of David and Joan Burge.  

David is a two-and-a-half-year survivor of pancreatic cancer.  He has an amazing story that I won’t take away from him here since we will be airing the video on Road TV tab of www.road2acure.org.  Look for it in a few days under Survivor Stories.  But the short version of his story is that after a failed attempt at a Whipple surgery (removal of parts of the pancreas and other organs–these get put back in, by the way), when it was determined that the tumor was to0 dangerous to remove, Dave underwent chemotherapy, which reduced the tumor by an amazing 80%.  This made him eligible for the Whipple.  Today, after radiation for microcancer cells, David appears to be cancer free.  But as this is a long battle, he is far from out of the woods, though his odds for survival are now as good as they get.  His condition will have to be monitored and managed, but he is among the lucky few.   He credits his success so far to seeking out the best surgeons and oncologists, being treated with more than the usual standard of care, and above all having hope.  I can’t wait for you to meet David and Joan by video.   Our interview went far longer than we expected, and we all enjoyed it immensely.  Heartbreaking, soul healing, laughing at the morbid and scary,  it was a conversation I will never forget.  As it was late, David and Joan fed Andy and me and put us up for the night.  I can’t thank them enough for the hospitality.   

Day 4 on the Bike

 
We awoke at David and Joan’s home and had coffee.  Scrambled calls to Jennifer and Joe followed about what to do with the chase truck and we decided it needed to be replaced.  Well, we are into this thing past the point of no return. Jennifer and I decided to buy a new truck and loan or lease it to the charity. As Joan said, time to put your big girl panties on and get to work.  I hope she was referring to Jennifer because I’m not putting on “Big Girl Panties,”  not even for this cause!  (Well, maybe …) Joan and David allowed us use of phones and computers to complete my scheduled interview with Lance Orozco/News Director of Station: KCLU/Santa Barbara NPR.  The interview went well, I think, but you be the judge. It will air on Tuesday February March 2nd and I will post a link to it when it is provided.  So, off to Fry’s to find a laptop that can handle producing video until Big Purple shows up.

 Then good news came from Jennifer. She had taken delivery of a new Ford F450 from Barber Ford in Ventura (thank you Gill, Robert, and Jose), and was getting the hitch installed by MCT Trailers of Ventura.  We made a mad dash to a notary so she could finish the paper work.  In the notary parking lot, as we geared up, a gentleman by the name of Mike looked at the bike and told us that he was just diagnosed with pancreatic cancer. As he was on the table getting ready for surgery, the hospital workers came in and unhooked him, saying his insurance would not cover a Whipple.  The Purple Victory had just done its job.  We were able to refer him to UCLA, where hopefully his insurance will be accepted, and we let him know that he needed to get into the Social Security office ASAP to get his benefits started.  This kind of moving coincidence is what we are doing out here.  It reminded me of our true purpose to help give hope and to educate.  Mike walked away with hope he did not have before, and I rode away humbled to be able to make a difference in someone’s life.  Not a bad exchange by any standard. 

 Our next stop was to catch up with our mail in Vegas (thanks, Connie).  Late, with rain clouds looming, we headed out for a night ride to Phoenix five hours away.  The Hoover Dam was amazing at night. Please forgive the point and shoot photos but the bags were too full for the pro cameras.   We made it to Kingman, AZ, and figured that, being cold and tired, we should stop for the night.

Day 5 on the Bike

We rode to Phoenix and made it in time to receive delivery of our video editing software at the local UPS store where Jennifer had shipped it to us.   And right at 4:30 p.m. we discovered that Andy’s tail and brake lights were out.   We called around but all the shop technicians had gone home for the night.  So we yanked in at a truck stop, and Andy and I and a friendly RV’r who happened to be an electrician rewired Andy’s rear lights.  So we were good to go again.  The rain was now threatening and it was late, so another hotel stop was in our future.  Not many miles today, but lots of little things falling into place.  I spent most of the night loading software so Andy could produce some videos and we could get pics up for these blogs. 

Day 6 on the Bike (or off the bike, to be more accurate)

Laundry time, rest, emails, our first relaxed meal, and we caught up on sleep.  We sat here and watched it rain buckets, knowing that the high passes of the desert on the way to Albuquerque are now unsafe for motorcycles.  The Big Purple 2.0 is now in San Diego at 858 Graphics getting the new truck wrapped.  My brother Joe is ironing the bugs out of our toy hauler, and Jennifer is madly trying to get caught up on unfinished business. I don’t know how they have done it, but they have worked miracles to get us on the road.  Software loads continued into the night, and so did flyer and Web site designs.

Day 7 on the Bike (or off the bike once again)

OK, finally we are publishing. Yep, this long-overdue saga is coming to you today.   The wrap is under way, and Big Purple, barring any further issues, will be on the road in the morning.  Here they come!  Can’t wait for home-cooked meals and my own bed!  Not to mention comforting my overworked and overstressed wife.  So there you are, I’m all caught up.  We are getting ready to ride to El Paso in the morning.  Watch for our video blogs on Road TV Journals from the road, and see you all out there on the Road 2 A Cure.

FOR IMMEDIATE RELEASE

One Man, One Motorcycle and Over 42,000 Miles On the

Road 2 A Cure for Pancreatic Cancer

Massive 50-State Awareness Tour Kicks off in Santa Barbara on February 20, 2010

Santa Barbara, CA. (February 15, 2010) – As a 6-year pancreatic cancer survivor, Chris Calaprice is fed up with hearing that pancreatic cancer is a death sentence. He is a survivor – and there are others, but there should be more. Actor Patrick Swayze should still be here. Renowned lecturer Randy Pausch should still be here too. Pancreatic cancer, the 4^th leading cause of cancer deaths receives less than 2 percent of the National Cancer Institute’s annual budget. This statistic was so appalling to Chris that he is staging this 9-month-long awareness tour – and receiving his chemo treatments on the road. Yes, you read that correctly. Chris’s doctor, leading oncologist and pancreatic cancer specialist Dr. William Isacoff of Los Angeles, will fly out to meet Chris on the road every 8 weeks to administer his chemo treatments throughout the course of this grueling 42,000-plus-mile motorcycle tour through all 50 of the United States.

So why 42,000+ miles? “I am riding one mile for each person in the U.S. who will be diagnosed with pancreatic cancer this year alone,” says Chris. “You know that old saying ‘knowledge is power?’ Well, knowing you have pancreatic cancer early and finding a specialist gives you the power to act quickly so you don’t die, quite frankly.”

Says Dr. William H. Isacoff, MD, a medical oncologist who practices at the UCLA School of Medicine and Chris’s doctor, “Currently the accepted standard of care for patients with advanced pancreatic cancer is gemcitabine, a drug developed by Eli Lilly and approved by the FDA 13 years ago. It has marginal activity when used as a single agent, resulting in tumor shrinkage in less than 10% percent of patients and a survival benefit that is disappointingly low – less than 6 months. Yet the vast majority of oncologists continue to recommend this treatment to their patients. Since gemcitabine‘s approval by the FDA, no other FDA-approved drug or gemcitabine-based combination has improved this dismal outcome.” Dr. Isacoff, who has treated numerous family members of Hollywood celebrities, adds, “Pancreatic cancer patients should be enrolled in clinical trials that utilize combination chemotherapy using three or four drugs where the treatment regimens are rationally designed with regard to an understanding of dosage, timing, and biochemical interactions. Following a relapse of his pancreatic cancer in 2004, Chris Calaprice received a four-drug chemotherapy regimen – that he remains on today – and currently shows no detectable evidence of the disease.”

We are asking you, our friends in the media, to DO something. Help us rally the troops to show up for the Feb. 20^th kick-off in Santa Barbara, or at the Victory dealership in Brea for the pit stop. Help us change – and save – lives.

Road 2 A Cure Kick-off Party info:

WHEN:            Saturday, Feb. 20, 2010

WHERE:           Paradise Store and Grill (off Hwy 154)

                        1 Paradise Road, Santa Barbara, CA 93105

TIME:               10:00AM – 2:00PM

The tour will kick-off in Santa Barbara and will travel south through Los Angeles down to Palm Springs for the first day of his tour, with a pit stop at Southern California Victory in Brea (515 West Lambert Rd, Brea, CA, 92821/714-256-6700). A detailed tour schedule is available at http://www.road2acure.org. Survivors, supporters, friends and family are invited to come out and participate in this massive kick-off party for Road 2 A Cure’s 50-state tour, which supporters will be able to follow online, and will also be documented on film and ultimately turned into a documentary. Help us make some noise to draw attention to pancreatic cancer and the urgent need for more research and funding. As the tour gets underway, Chris and his team will be meeting with survivors, family members, friends, activists, policy makers, oncologists, medical centers, researchers and local as well as federal legislators to show people what it’s like to live with pancreatic cancer, and to activate change.

Victory Motorcycles has very generously jumped on board to sponsor Chris and Road 2 A Cure, as well as Level Studios and the Automatic Transmission Rebuilders Association (ATRA). “Victory Motorcycles is proud to offer the loan of the award-winning Victory Vision for this project. The Vision has proven to be a reliable and comfortable machine, and when outfitted with touring accessories is more than capable of this long and busy trip. The Victory Vision Tour ABS model we are loaning represents modern American design and production quality, and features all that a rider needs to turn miles and turn heads. The staff at Victory motorcycles wishes a safe journey to all involved, and is happy to be associated with such a unique and progressive event program,” states Robert Pandya, External Relations Manager for Victory Motorcycles.

For more information on this monumental 50-state road tour or for information on donating or sponsoring Road 2 A Cure, please visit http://www.Road2ACure.org, contact us at info@road2acure.org or call 661-702-9202.

“Currently the survival rate for pancreatic cancer is just 5% beyond 5 years. I’m still here almost 7 years, and I want to be the new face of a ‘survivor.’ So I’m doing something about it with Road 2 A Cure – and you can help us” – Chris Calaprice, Founder of Road 2 A Cure, pancreatic cancer survivor and melanoma skin cancer survivor.

ABOUT ROAD 2 A CURE:  Road 2 A Cure co-founders Jennifer and Chris Calaprice became involved in the fight against pancreatic cancer in October of 2003 when Chris was diagnosed. Road 2 A Cure, a 501(c)(3) non–profit organization, was their answer to making their own fight have a global impact in the war against cancer. Road 2 A Cure is out doing what others won’t – speaking their minds and actively engaging those affected by pancreatic cancer and those responsible for finding a cure.

Read more

“I’m going to die.  Is that even possible? GTFOH!!! I’m invincible!!!  I go when I’m ready!  This is between ME & GOD!!!!”

This is the thought with which I began my day.  This day.  Prancing up the hallway of my office, black stiletto boots clacking against the tiles.  GTFOH, indeed.

Being diagnosed with pancreatic cancer has a brutal way of altering life’s perspective.  Not by creating an urgency to tackle a bucket list, but by forcing me to constantly reassess if I’m living or merely existing.  Do I strive to pull the happy out of each moment or allow the happy to pass me by?  It’s a funky balancing act, not focusing on the negative statistics while remaining rooted in reality.

There’s a lyric in one of Rihanna’s new songs that goes: “To be what you is, you gotta be what you are.  The only thing I’m missing is my black guitar!  I’m a ROCKSTAR!!!”  Well, you can’t rock it if you let the happy pass you by, right?  It’s no fun to sit inside & cross my well-heeled legs if nobody else gets to appreciate the view; if I don’t put some miles on the stilettos; if I don’t dance as if nobody’s watching.  Looking back on the past and waiting for some imaginary other shoe to drop is a drag.  Instead, I look toward a positive & joyous future, full of surprises, new adventures, & new shoes.  A girl’s gotta have shoes!!! <3

The bottom line is that everybody’s going to kick the blazin’ blue crap out of that bucket and it doesn’t matter how well you eat, how many chemicals you inhale or ingest, or whether you prefer Volvos to Harleys.

With that said, as a grand ol’ salute to Chris & Jenn’s February 20th kick-off, yours truly is getting her motorcycle license!!!  And, !nope – while my biker boots will be rocker-HOT, they won’t be stilettos!!!

With tons to do and little time left before the big journey, I sit here for a moment or two and reflect.  It has been a long road already, and this is really only the beginning.

  OK–I guess I should wind the clock back a bit. 

One day a few years ago I noticed that my stomach just wasn’t right.  Things where awry in the plumbing, if you know what I mean.  Well, I was a busy guy, had a plan, a beautiful wife, a career right on track (yeah, I spent too much time at work, but I had time to make up for that later), stuff to do.  So as usual, I put off the odious as long as I could.  But carrying Tums and baby wipes was becoming embarrassing, so I dragged my unwilling carcass to the doctor.  I was also motivated by a strong desire to avoid my wife  Jen’s caring yet strident pleas to see a doctor.  So I did make an appointment with a gastroenterologist, and after the first appointment a series of humiliating but necessary tests had to be run.  I thought that this invasion into my routine life was probably unnecessary; but fine, if he thought I needed them, I was williing to screw up the courage to have scopes run into me like a pig on a spit!  It sucked!  I turned out to be very resistant to pain medications and anesthesia (more on that later), so that twilight sleep the doc promised me was a little more than a daytime nightmare.  You can’t say, “Hey this is not OK!  Lets stop NOW!” with a tube down your throat looking around the interior of your stomach! But we got past that, and the fun of the sigmoidoscopy (quoting Wikipedia: “Sigmoidoscopy is the minimally invasive medical examination of the large intestine from the rectum through the last part of the colon”). LOL. Minimally invasive my, excuse the pun, ass!

 Hey, big surprise: they found nothing.  Sure, I had backaches and what I thought was Irritable Bowel Syndrome, but, as I told myself, my job was stressful and I have a way of generating my own stress.  There was some talk of further testing, but, as I have said, I was a busy guy and I was adamant about going on with my busy life.  Well, the human body is a funny thing:  ignore the warning signs and it will put on the brakes.  And that is just what it did.  One night as I stood between the bed and the bathroom (or should I say tried to stand),, not able to head to either I discovered a new level on the pain scale.  Because I had been in the 3rd Battalion of the 75th Regiment of the U.S. Army (Airborne Rangers) at one time, I am no stranger to pain.  I have lived with a bad back and tweaked shoulder from being a “hung jumper”–the term used when one jumps out of an airplane and gets to fly with it for a while on the outside.  I have experienced the joys of a 25-mile road march where your rucksack (backpack) digs into you until you bleed, and I watched the blood seep into the fabric of my jungle boots from the broken blisters on my feet.  I thought I knew a lot about pain.  WRONG!  I let my wife know in no uncertain terms that it was time for an ambulance.  Call 911!  At her insistence, we were going to drive to the hospital instead (it would be faster).  I won’t go into the details of Mr. Toad’s  wild ride as law enforcement may be reading this account. Suffice it to say that it was foggy outside, I was yelling at Jen both to speed up and to slow down.  She was scared on all fronts, and when the pain was not shutting my brain down I was scared as well.  In the end, though, she was right: this trip was much faster than calling an ambulance.  For the record, however, I do not recommend this approach. 

If you know me already, you know that it is not in my nature to yell at completely innocent strangers.  And I am sure that the nice woman working the ER desk was not prepared for the response she got from me as I barged past her in search of a doctor.  I think the precise words I used were: “You can write your f*&#ing book later–get me a doctor  … NOW!” Jen recalls that the ER woman later said, “I can’t believe this nice man is the same one that came in here earlier,” or something to that effect.  It truly is amazing how fast that doctor decided morphine was a good idea, and how rapidly it changed my demeanor. 

Now started my first long visit to the hospital system.  Let’s say over the years this has become far too familiar of an occurrence. 

I’ll post more later about the months to follow with their various surgeries, tests, procedures, hospital transfers, reaper cheating, anesthesia stories, etc.,  but let’s leave this part of the story with this piece of advice:  listen to your body, listen to your doctor, listen to your spouse. No matter how much it sucks or scares you, do the tests, and don’t stop until you have an answer.

I will come back to the story of my surgery and the almost six years of chemotherapy in our survivor-stories section.  But this blog is a story of Road 2 A Cure and how it got started, and it is my first in a long series of blogs as we set out to change what we can.  Change is made up of many small events coming together.  This is the story of our small efforts to bring it all together.

Everything is an event cascade.  How we get from one place to another is never a single choice, but a series of events and choices.  Life is the story of these events and choices.  Like a stack of cards: move one and they all fall down.  Modern physics suggests that there are an infinite number of universes, and many possibilities can be played out in them. This is the story of one small universe in this infinite multiverse, and over the next months we will explore together how my story will play out.

So–next time we will talk about Shannon and how I came to ride motorcycles again.  V-Twins 101 and how our friends there got us on the road. And the Pancreatic Cancer Action Network and doing something larger than ourselves. Stay tuned.

Last week I turned 44.  Wow, the time passes soooooo quickly, doesn’t it?  I was diagnosed at 40 & sure as starch didn’t think my 44^th would be spent celebrating life.  Dead people don’t get glorious massages.  LOL.

 Ordinarily I spend my celebratory week out of the country, exploring new things and remembering how to connect with my SELF, relax, and enjoy my time on this planet.  This year, however, I opted to vacation at home in NYC and be nice to Gigi.  What a spectacular day!!!  Spectacular primarily because I’m vertical, secondly because I’m able to fully care for and sustain my existence, thirdly because there truly is joy in every moment of every day.

 I awoke kicking myself because my massage was scheduled at 9:15a.  The hilarious thing is that I scheduled it!!!  Me…the chick who’s pretty much allergic to mornings.  Duh.  So after being walked about the neighborhood by my dog, I darted off to my appointment waaaaaayyyy on the other side of the City.  If you’ve never had a massage, what are you waiting for???  Once you find someone who rubs you the right way there are few things you’ll appreciate more.  Trust me.

 Back on the other side of town was my 11:30a appointment with my all-time favorite hair stylist.  To say that my hair is “special” is an understatement.  Since chemo, though, it’s a whole new level of “Lord-Help-Me-I-Don’t-Wanna-Comb-This-Mess.”  How this man consistently manages to whip my curly/wavy/tangled tresses into a billowing blanket of diva-liciousness is beyond me.  And all in under 30 minutes.  He even gave me a complimentary Happy Birthday Cut!!!  Let the church say, “Amen!”  When I left the salon there were replicated versions of Cloud 9 beneath my tootsies….which I happily followed to the nail salon.

 Pampered princess?  Nah, not ordinarily.  I’m fairly frugal, and not too keen on letting other folks handle my grooming needs.  Goddess???  You betcha!  I am rather fabulous in my own sort of way.  Whatever I’m having done or doing has to be so close to perfect that any flaws are imperceptible.  Needless to say, I do most things myself.  However, not on my birthday.   Outrageous orange for the fingers, tantalizing pink for the toes.  For the second time in a day my feet were delightfully massaged.  AND I sat in the massage chair for the whole time.  Oh, yeah!

 All that personal attention can make a girl hungry, and I’m one girl who can eat.  Especially since I’d skipped breakfast.  My destination?  Mexican.  Sour cream & cheese & jalapenos.  WAIT!!!  I can’t eat dairy!!!  It was bad before the Whipple surgery in October, 2006, but now?  Unh-unh!!  Okay, so jalapenos.  I had more than peppers.  What else did I eat?  The food wasn’t too impressive so my memory fails me; I attribute my short term memory loss to chemo, too.  I spent the bulk of the time admiring my SCREAMING orange nails anyway.  HA!  Before I knew it, the day had gotten short.  Time to walk the dog…again.

 I zipped Uptown, played with my pooch, and took a nap.  Hey, tell me you don’t appreciate an hour-long nap.  You can’t say it, can you?  The nap left me refreshed and rejuvenated for Phase 2 of my birthday.  With the puppy fed and walked, I showered and dressed for my Broadway excursion.  There’s nothing like a sappy, passionate musical to swell the heart.  Boy-oh-boy did the heavens deliver!!!

 There’s a new production of “Ragtime” running.  I scored a second row seat on the aisle for a mere pittance.  One word:  Freakin’ WOW.  Okay, so that’s two.  There were times when I wanted to get up and sing and dance, too!!!  Times when I wanted to slink down into the orchestra pit and borrow a clarinet to play along!!!  Times when I wanted to shout, “Whooo-hooo!”  At all times I was grateful for being here, on this planet, able to enjoy the sights and sounds of my day.

 What’s that grumbling????

 Like I said, “A girl’s gotta eat.”  After “Ragtime” I’d planned to duck into a little Cuban spot, even if my poor pancreas no longer allows me to enjoy a good Mojito (or a bad one for that matter).  At some point during the play, though, I got a maddening craving for baked macaroni & cheese.  There was no shaking the desire.  B. Smith’s Restaurant was my new target, and the kitchen closes at 11:00pm.  I got there at 10:45pm.  Oh yeah!!!

 Catfish.  Kale.  Mashed potatoes.  Collard greens (vegetarian, of course).  And (are the harps playing?) baked mac & cheese.  I don’t know what they put in it or how they make it, but I DO know that somebody’s grandmomma is back there in that kitchen.  My mission began – Clean My Plate.  So imagine my discord when the couple at the next table struck up a conversation.  Ugh.  Must. Eat. Food.  They seemed like perfectly lovely folks, but Must.  Eat.  Food.

 I gave into it.  The socializing that I’m sometimes rather awkward at.  Not only did they “seem like perfectly lovely folks,” they truly were.  We yammered well into the evening whilst I shoveled grub into my face.  Eventually I revealed that it was my birthday, to which they offered to buy me a celebratory drink.  Bum pancreas = no booze.  I declined.  At which point they offered to buy me dessert.  Bum pancreas = no sugar.  Again, I painfully declined.  I do love  and miss a good dose of sugar.   As we continued to talk, sharing laughs and little stories, the staff came from the back with a beautiful bread pudding topped with ice cream and a candle….singing happy birthday to ME!!!  I wanted to cry.  Such happiness.  These people didn’t know me from Eve, and yet wanted to celebrate my birthday with me.  Of course I couldn’t eat it.  Drat!  I made a wish, blew out the candle, & placed it on their table for them to consume.

 Last year on my birthday trip to Costa Rica I met another great couple who surprised me with a cake.  Where do these people come from & why aren’t there more like them?  The world would be such a better place.  Just as with the couple in Costa Rica, I decided to share my pancreatic cancer diagnosis with them.  Partly because I didn’t want them to think me ungrateful for their kindness and company, but mostly because they are the type of people you value for the beings that they are.  There’s something that whispers, “It’s okay.”  And it was.  There was no pity, no long faces, only congratulations and happiness at my being a 3 and a half year survivor.  Now that’s cool.

 As the night wound down, along with the contents of their wine bottle, we decided to part ways and call it a night.  And as we exchanged hugs and fond farewells, the husband says, “Well since we couldn’t buy you a drink and you couldn’t eat the dessert, we’ve paid for your dinner.”

 There are glorious people on the planet.  There is happiness here.  Despite certain circumstances and situations, life is grand.  Enjoy it and LIVE!!!!

 Whooo-hooooo!!!!

Hello! I’m Jennifer Calaprice.

I am married to a 6 Year Survivor of Recurrent Pancreatic Cancer. Chris was diagnosed in 2003. He was 36 years old.

The floor below my feet had vanished. And, just as quickly, our world was turned upside-down. My only concern was doing what was necessary to keep Chris alive.

Luckily, the cancer was caught early.

The months following diagnosis were a constant stream of hospitals, doctor appointments, surgeries, medications, recovery, chemotherapy, good days and bad days. The successful Whipple surgery, in particular, was an extensive and complicated surgery and recovery for Chris. He was lucky to have received such an option. Three months after surgery, due to the tenaciousness of pancreatic cancer, Chris started his chemotherapy regimen. Three months after that a scan glowed positive for cancer. My worst nightmare was coming true. I was terrified and furious and sad. Lucky for me my sister was a phone call away. Lucky for all of us an adjustment in Chris’ chemotherapy regimen proved successful in eradicating the cancerous cells.

Chris has since been diagnosed with melanoma skin cancer, and has become a diabetic (a potential condition post-Whipple). Luckily, the melanomas were removed with clear margins and he is now maintaining excellent blood glucose levels. Chris continues to undergo chemotherapy for pancreatic cancer and will, quite possibly, for the rest of his life. Needless to say there are many doctors on my Christmas baking list, all of them so deserving.

My husband is lucky to be alive. His strength of mind, body, and soul continues to amaze me. He is lucky to have the best and most experienced doctors and nurses in the world. We are lucky to have our wonderful support group of friends and family. Surviving this without them is unimaginable.

Many people are not as lucky.

Chris and I remain positive and are enjoying our life and our time together, more than ever before.

He is currently 100% cancer-free.

We are lucky.

Please help us spread awareness and raise funds for pancreatic cancer.

Get involved in Road2ACure – The 50 State Tour Documentary beginning February, 20th 2010
Pancreatic cancer is the 4th leading cause of cancer death in the United States, yet it receives less than 2% of our National Cancer Institute research funds.

I have survived recurrent pancreatic cancer since 2003. Like many other people diagnosed with pancreatic cancer, I am not old, nor an excessive drinker. We understand little about the causes of this disease or its prevention. This can change with your help.

I have lived a full life—a life full of backpacking, multi-hundred mile bicycle tours, service in the U.S. Army Rangers, rock climbing, sailing, crossing oceans, diving wrecks. I have a loving marriage, and the best friends and family imaginable. Unfortunately, many others who are diagnosed with this disease will not have time to fulfill their dreams or enjoy their family and friends.

Pancreatic cancer is the 4^th leading cause of cancer death in the U.S.; however, it receives much less funding than any other leading cancer. Pancreatic cancer is preventable and curable; we just have not yet found the prevention or the cure.

It is not in my nature to solicit help from others. However, as Edmund Burke once said, All that is necessary for evil to succeed is that good men do nothing. I find that I must give voice for those who no longer can or for those who are consumed by the battle and can not spare the energy. Our goal is that with the help of caregivers, cancer advocacy organizations, private sponsors, federal funding, researchers, and dedicated physicians we will understand this disease and find a cure. Any assistance you can offer in helping us get the 1^st Annual Ride for Hope Memorial Ride and Rally off the ground will be most appreciated. It is our sincere hope that you will find a way to help us raise the visibility of our motorcycle ride and help raise public awareness of this devastating disease.

My name is Chris Calaprice and I am a survivor. We are few. Rarely are we around long enough to make others aware. I speak for those who can not.

We need your help. Please join us and make a difference.

Get on the The Road 2 A Cure with us. Become a Rider (or follow in your car) from Santa Barbara to Los Angeles County to Palm Springs, California on Feb. 20th 2010.  Get your fundraising page going here and Save the Date.  We are departing from Paradise Store and Grill, Santa Barbara, immediately after the kick-off party.  Our Los Angeles pit stop is still to be determined.  We end our day and ride in Palm Springs.  We head to Vegas on the 21st.  Hope to see you on the Road!

All the other roles that I have played in my relatively long life – happy young wife, unhappy young widow, career person, miserable party in a second attempt at married bliss, cancer survivor -  are secondary to that essential truth – I am a mother.

It is impossible to imagine that anyone could suffer life-threatening cancer without really noticing it much, but I think that is what happened to me.

Today, as in all the other days that have passed since October 2003, I live with the fact that my son, 41 years old, is a survivor of pancreatic cancer.  Each of those days I have woken up with the same absolutely determined thought – pancreatic cancer will not come back today or any other day.  This mantra must be part of what has made me able to continue being what I think of as a whole person.  It has kept me believing that there is hope no matter what.

I think I can say honestly that I really do understand what everyone with one of these dreadful diseases must suffer.  Six months after Chris’s 10-hour surgery and his prolonged pain-filled recovery from it, I was diagnosed with ovarian cancer, had the surgery, and Chris and I together endured the chemotherapy that followed – 6 months for me, unending to this day for him.  My memories of that awful time primarily reflect my fear and dread of what was happening in Chris’s life, and my concern for its effect on Jenny’s life, and on my other son and his family. I hardly thought about my own.

            Through all this I watched my son and his wife face every day – good and bad — with a spirit of optimism and determination to really live every moment.  They were, and remain, our inspiration, our cornerstones that help us maintain our strength and spirit.  They are my heroes.

            If I could speak to all out there with this terrible cancer and other bad ones, I would say maintain hope, do not be persuaded that there is none.

            As Chris and Jenny have taught all of us to do, be determined to believe that help is on the way.  We will find the means to fund the research for methods of early detection, specific new treatments, dependable remission, and CURE.

            WE WILL.

Here is the story:

Dear Family and Friends,

Summary: Jill’s CT scan at the end of April was clear. She still has chronic pain, frequent nausea and other side effects, but she is alive and that is no meager feat. Her biochemical markers are holding or improving. She looks better and better all the time. Based on appearances, it is easy to forget what she faces daily. While we are not out of the woods yet, few get this far. Jill has passed the two-year mark.
__

It is now over two years since Jill’s diagnosis and two major surgeries and, so far, there is no evidence of recurrence.

Of all those diagnosed with pancreatic cancer, few make it this far. In most cases, something like 80-85%, by the time it’s discovered the cancer has already metastasized and it’s too late for surgery to remove a localized tumor. Life expectancy is a matter of months. Dith Pran, the inspiration for the film The Killing Fields, died in March this year, less than 3 months after diagnosis. Bill Lofthouse, who made more Rose Parade floats than anyone died in July after “a short bout with pancreatic cancer” as the Los Angeles Times put it. Gene Upshaw, NFL Hall of Fame guard and head of the NFLPA, died August 20th, just three days after his pancreatic cancer was diagnosed.

Without surgery, pancreatic cancer is essentially a death sentence. But surgery is hardly a cure. Luciano Pavarotti had surgery the same month Jill did. He died a year later. Jill’s chemo pal, Pam, had surgery at Stanford and she’s gone now. A local woman who had surgery with Dr. Arnaout a month before Jill, and whom I had met previously because her daughter attended school with mine, has also died. Randy Pausch, the 47-year-old Carnegie-Mellon professor of “The Last Lecture” fame had surgery in September of 2006 (two months after Jill’s) followed by the very best treatment medical science could bring to bear. His passing last month reminds us all how deadly pancreatic cancer really is. Randy didn’t survive two years after his diagnosis; Jill already has.

Because pancreatic cancer is so swiftly lethal, two years is a significant milestone. Half of those diagnosed will die within 6 months. 75% will die within the first year. Fewer than 10% survive two years and many of those are battling active cancer. Those who have no evidence of disease at the two-year mark are a lucky few. Two years ago, when Jill had recovered enough to meet with her future oncologist Dr. Isacoff, she asked “What are my chances?” Isacoff replied, “No one knows” and then as he walked out the door he added, “If the cancer returns, it’s usually in the first two years.”

“If the cancer returns, it’s usually in the first two years.” Those words have echoed in my mind ever since. It’s been two years. So far, Jill’s cancer has shown no signs of returning. CT scans have been clear. Jill doesn’t make CA 19-9, the preferred serum tumor marker for pancreatic cancer, but the next best diagnostic, CEA (carcinoembryonic antigen), was also negative. Although only 15% of her pancreas remains, she requires relatively little insulin and her last Hemoglobin A1c was almost non-diabetic (6.3). Her BUN (blood urea nitrogen) had been borderline high, but is now coming down so her kidneys appear to be returning to normal. One of the chemotherapy drugs Jill was given was Cisplatin and the biggest concern with Cisplatin is toxicity to the kidneys. Jill isn’t just holding on, she’s slowly getting better and better. Just the other day, she complained about having to get another haircut so soon because of how fast her hair is growing. Considering the chemo she’s been through that complaint was a blessing in disguise.

To have no recurrence at the two-year mark is exceptional; to have no recurrence at the two-year mark when the cancer was the type of cancer Jill had and was as advanced as it was at the time of surgery might well be a first. Some forms of pancreatic cancer, such as islet cell, are not as aggressive and have a lesser tendency to metastasize. When Steve Jobs of Apple Computer was diagnosed with islet cell pancreatic cancer, he had surgery and that was it. No radiation and no chemotherapy, and he has been doing fine for years. These milder forms of pancreatic cancer, as well as small tumors that were detected very early constitute many of those who make it two years without recurrence. Jill had adenocarcinoma, the worst of the worst, and it had already metastasized locally to the spleen, some lymph nodes, and possibly the circulatory system. In a recent interview, her surgeon, Dr. Walid Arnaout recounted:

Jill hoped the tumor would be completely resected. However, after a seven-hour operation, Dr. Arnaout discovered the tumor was very extensive. “It was wrapped around major blood vessels, which made its complete removal too risky to perform,” he explains. In essence it was deemed unresectable. Without a miracle, Jill had three to six months to live.

“I struggled with the fact that Jill had no hope without completely removing the tumor followed by extensive chemotherapy,” remembers Dr. Arnaout. “Yet the surgery was risky and perhaps life threatening.”

Three days later, Dr. Arnaout and Jill decided to take a second chance at removing the tumor. Before entering the operating suite, she said goodbye to her husband and family as if it were the last time she would see them. Ten hours later, Jill’s tumor was completely removed and her hopes for survival became a reality.

Dr. Arnaout often refers to Jill as “my miracle”. When Jill and I were in Washington, D.C. this past March Jill spoke with Julie Fleshman, co-founder and president of the Pancreatic Cancer Action Network. Julie mentioned that she’d never heard of anyone having two operations.

As you all know from my first letters, Jill’s recovery from these two surgeries was far from easy. In all honesty she’s still recovering. She’s just been taken off her daily Fragmin (heparin) injection which is a relief for both of us. Despite Lidocaine and icing beforehand, this injection was painful and could leave a bruise the size of a quarter. I still cannot comprehend, and certainly cannot put down in words, what Jill has been through and continues to face.

Some days are better than others. Often she’ll wake up nauseous or in pain and doesn’t much feel like eating. Every single day is measured in terms of the intensity of her pain and how many “swigs” of Oxycodone IR (Immediate Release) she’s taken. We tried a special pain management physician, but he just prescribed different pills with even worse side-effects than Oxycodone. Jill has a gazillion doctor appointments, scans, blood tests and other procedures at facilities from Thousand Oaks to UCLA. There are a handful of pills before every meal; Jill could not survive without special digestive enzymes.

Jill does many of the things she used to. The notable exceptions are golf and stained glass. It hurts too much to swing a golf club. Because she’s been on an aggressive blood thinner, she couldn’t afford to get cut doing stained glass. Her mornings are usually pretty good: she goes swimming sometimes, has lunch or coffee with different girlfriends, goes grocery shopping, etc. By late afternoon, the pain has increased; nonetheless Jill still cooks dinner several days a week. We manage to get away every once in a while, often with our dog Brandy. We made it out to Colorado to see my Mom. Jill’s going to Sea World in two weeks to spend a day swimming with, feeding, and helping to train the dolphins there (I’ll be working the video camera).

Of all the things Jill does these days, spending time with her grand-daughter Quincy is at the top of the list. Quincy recently turned one, has loads of personality and this hypnotic smile. She’s at the age where everything is either a discovery or a game. All you new boomer grand-parents out there know exactly what I’m talking about (see photos).

To say that Jill’s tough is a bit of an understatement. In June, we decided to take a 4-day weekend on Catalina Island. As we’re about halfway to Avalon Jill realizes she forgot to pack her Oxycodone. Since this is her only relief from pain, it was a serious mistake. We couldn’t have Dr. Isacoff telephone or FAX in a prescription because Oxycodone is a controlled substance (a powerful opiate) and only the original, handwritten prescription on a special, numbered DEA form is valid. Besides, most pharmacies are not going to have stuff this strong lying around. We could have, and maybe just should have gone home the next day and chalked it up as something not meant to be. Not my Jill. What does she do? She goes shopping and buys a new bikini. Despite constant pain, she’s determined to live as if nothing at all was happening. Later, as we lay out by the pool sipping our mojitos, every time I looked at Jill I just melted.

Jill is an inspiration to more than just me. Dr. Arnaout has returned to SoCal to start a center for liver and pancreatic cancer at Northridge Hospital. He and Jill were interviewed for a forthcoming article for the hospital’s quarterly newsletter. The quotations in this letter are from that interview. My daughter Jane is in training to run the NY Marathon to raise money for cancer research at Memorial Sloan-Kettering Cancer Center in NYC. Her pledge page is https://fredsteam.mskcc.org/fundraising/Controller?action=userHome&user_id=38559&event_id=113. Please lend her your support. She makes her father proud. Lastly, our friends Chris and Jennifer Calaprice plan to interview Jill for their forthcoming film on pancreatic cancer. Chris is a 4-year pancreatic cancer survivor whose cancer returned and Dr. Isacoff has been able to keep it controlled. Their web-site is http://www.road2acure.org/.

Jill’s recovery so far is, statistically speaking, exceptional. But statistics are the mathematical equivalent of “luck”. Statistics are all about averages, not about individuals. So, while Jill and I are most certainly “lucky”, I do not believe her progress is entirely accidental. When Jill’s cancer appeared, she ignored the statistics. During her interview she said,

“Every day I tell myself I don’t have cancer and it won’t come back,” proclaims Jill. “It’s the only way I can stay positive. You can choose to fight or believe in all the statistics you hear. I tell myself that I can and will beat the odds.”

I didn’t ignore the statistics, but I understood their limitations. A handful, and I do mean a handful, of people have actually beaten pancreatic cancer. There’s one 30+-year survivor. It is possible. My mantra is simple – “Why not Jill? Why not now?”

It doesn’t take much study to realize that no one really understands pancreatic cancer, or any cancer for that matter. Otherwise, there would not be all these different, and often conflicting, explanations. There’s an Italian oncologist, a real MD, who believes that cancer is a fungus! His treatment is a lot less toxic (and much less expensive) than conventional chemotherapy; it’s just sodium bicarbonate delivered directly to the tumor. There are many other theories and alternative treatments and have been for decades. They are all part of the puzzle. They are all partly right.

The fact that the very words the medical establishment uses are not consistent with reality does not inspire my confidence. The term “cancer free” is very misleading. There’s no way to determine if a given cell is carcinogenic without putting it under a microscope. You obviously can’t do that for every cell in your body. Just because we can’t detect any cancer with the limited tools we have today doesn’t mean it’s not there. Since every single patent was “cancer free” just before the cancer “appeared”, from a predictive standpoint the term has little value. The notion of “cured” is equally useless. Labeling the absence of recurrence over 5 years as “cured” is arbitrary. There’s nothing magical about 5 years. The initial stages of cancer can be very slow; they can take years or even decades. “Cured” is just a way for doctors to claim “victory”. And my favorite: doctors talk about cancer “coming back” when it seems obvious that maybe it never really left.

The shear complexity of all the inter-related biochemical pathways that we all possess makes nderstanding cancer about as complex as understanding all human biology and biochemistry. Asserting that cancer is just a bunch of cells whose DNA got screwed up is, at best, only part of the picture. DNA is only a recipe, there’s a sea of proteins and amino acids floating around that are both the chef interpreting that recipe and the ingredients the recipe uses to sustain life. Rather than only viewing cancer as a condition that you either have or you don’t, it seems equally useful to view it as a process that is either under control or out of control. We probably all have cancer cells lurking around inside us. As long as our immune system manages to find them and eliminate them before they get out of hand, they are undetectable with today’s technology. What if cancer is simply a catastrophic breakdown in all those inter-related processes?

There’s good evidence suggesting that the best way to fight cancer is to be healthier. That’s what Lance Armstrong, Ruth Heidrich, and many other survivors have done. Even Dr. Isacoff unwittingly gave credence to this notion. Every chemotherapy session and every appointment ever since began with the same general questions: “How’s your energy? How’s your weight? How’s your appetite? How’s your breathing?” This was followed by questions to ascertain if there were specific problems from the chemotherapy like “Any vomiting? Any sores in your mouth?” and so on. It eventually dawned on me that those general questions were the best indication of whether or not the treatment’s working. Dr. Isacoff ought to know what to look for; he’s been doing this for 30 years.

While Jill and I had thought of ourselves as reasonably healthy, we’re trying to be more so. Our diets are increasingly vegan or vegetarian with a low glycemic load. You can’t change your DNA, but you can affect that sea of proteins, particularly by what you eat. The strong correlation between the amount of animal foods consumed and the incidence of heart disease and cancer world-wide is impossible for us to ignore. The many mechanisms linking cancer with animals in the diet are becoming increasingly well understood, but you’re not likely to hear much about it. If it isn’t obvious why this is so, just “follow the money”. The high glycemic index and load of refined foods floods the bloodstream with excess glucose and cancer thrives on excess glucose. Jill and I take a few carefully chosen supplements. We get a little exercise. However, the objective things we do are only half the battle plan.

In the final analysis it takes more than doctors and diets to fight cancer. More than anything it requires an uncommon frame of mind. Jill has been, in the best sense of the word, fearless. Try to imagine being faced with a diagnosis of pancreatic cancer. You can’t. It is scarier than I can imagine. Yet somehow, you have to move beyond that fear. I don’t mean bravado, nor a denial of the gravity of the situation, but rather a refusal to let it squeeze the life out of you. Dr. Isacoff’s PA incredulously asked Jill not once, but twice during two separate chemotherapy sessions, “Are you happy???” At first I didn’t get it, but I suppose that, relatively speaking, Jill was notorious in Dr. Isacoff’s office. Yes, she’s battling the most lethal form of cancer known to mankind, but not even pancreatic cancer is going to stop Jill from being Jill.

Two years ago Dr. Arnaout told me, “What we need here is a miracle.” What he did not realize was that the real miracle had already occurred. The miracle is not that there is as yet no recurrence. The miracle is Jill. The miracle is revealed in everything that she does, played out day after day.

Our special thanks to those of you who have made individual donations or written their Representatives and Senators to urge their support for pancreatic cancer research.

Please keep Jill in your thoughts and prayers; I believe this journey has only just begun,

-Walter

My name is Kay Richardson and I live in Fairfax, Ca., a beautiful little town not far from San Francisco. In August 2006 I was living temporarily in LA while co-developing a TV series about green architecture. This venture was a natural evolution after many years of great attention to healthy living – I’d eaten organic since my youth, exercised daily and enjoyed almost perfect health.

That August I had just turned 54 and was shocked when I suddenly felt listless, a loss of appetite and even depressed. My friend noticed my color changing to yellow and within days I was in the hospital having a stint put into my bile duct. There was a tumor blocking it and causing the bile to back up.

Fortunately I found my way, almost blindly, into the hands of a kind and very experienced surgeon in LA. Because the 2 cm mass had blocked my bile duct the cancer was diagnosed early enough to undergo a Whipple procedure. The surgery and recovery went remarkably well. But while the margins of the surgery displayed no cancer cells, there were two lymph nodes out of 11 examined that did reveal malignancy. The pancreatic tumor was staged at 2B and my surgeon strongly encouraged me to start chemo therapy as soon as I could.

I am a single woman with no children and here was my greatest fear before me – getting seriously ill with no primary person by my side. It was a great revelation to realize that I had the power to face that fear. It began with the flood of friends and family who were immediately by my side. I knew then I would not have to endure this confrontation with my mortality alone. But what surprised me the most was the life force that rose up inside and began to take control of my healing.

I certainly had my moments of despair. A sleepless night of internet searching filled with pancreatic cancer statistics can do that for sure! There were days when I was positive I did not have what it would take to fight what seemed a losing battle. But the life force continued to prevail. Interestingly, the TV series I’d been working on was called Design For Life. Now I felt challenged and motivated to design a strategy for my own survival.

I had returned to the Bay Area after recovering from the surgery and sought the opinion of a top pancreatic specialist at UCSF as well as a general oncologist in Marin County where I live. At the same time I learned of a clinical trial for a vaccine at Johns Hopkins in Baltimore. The idea of having success with a vaccine compelled me to make that happen. It required that I undergo either chemo therapy and/or radiation first however. Ultimately I chose to do the standard Gemzar therapy for six months with a well respected general oncologist near my home, someone who was part of a practice using integrative modalities as well.

When I finished the 6 months of Gemzar therapy I was able to fly to Baltimore to qualify for the vaccine trial. This meant passing a CT with no signs of recurrence. I passed the CT and had real hope at that time that I could beat the odds. I received three doses of the vaccine over a period of three months, flying each time to Baltimore. After that the plan was to present a CT every 6 months proving no recurrence and if so I would be given another booster shot.

I was feeling great and certainly I wanted to believe the vaccine was working, but one day in October, a little more than a year since my initial diagnosis, I woke up with a strong intuition that I needed to check my CA-19-9. Somehow I had fallen in the cracks between Hopkins and my local oncologist, who felt I was in good hands with them. Nobody had suggested I get my markers checked in that long six month interval however. Sure enough, the cancer markers had risen to 72. This is not a high number but I felt a sense of alarm. I was beginning to realize that I had to be even more proactive about my survival plan. I had to take more charge of how things were being managed and for that I had to educate myself more.

It motivated me to attend the Pan Can symposium in LA the following month.
I felt a significant jump in my own knowledge of the disease after listening to the top pancreatic specialists give their presentations that day. I talked to many other survivors and got a sense of our collective will to find solutions at the cutting edge of the field. From this I knew for sure that if a recurrence was indeed happening I could no longer rely on my general oncologist. I needed the best specialist I could find. Of course I wished that I had attended this symposium a year earlier!

In spite of what I’d learned at the conference, the next several months saw me immersed in a tragedy of errors with the diagnosis of a recurrence. My cancer markers were spiking upward at an alarming rate yet even the Johns Hopkins doctors could see no tumor on the CT. They told me I could continue in the trial. Stanford told me I indeed had a tumor but my pancreas could perhaps be removed for a cure. A cyber knife solution was also suggested. There were several more twists and turns as my markers soared to 638 and Christmas was approaching. But what I had learned at the Pan Can conference gave me a new confidence about what direction to take next.

It was finally clear that there was indeed a 4.9 cm tumor, located in the surgery site of the removed pancreas head. A CT and PET scan had revealed no metastasis however. But I remembered the words of Dr William Isacoff, whom I’d seen speak at the symposium. He’d emphasized that pancreatic cancer is a systemic disease. Even if you take out the main mass there are almost surely microscopic cells waiting in the wings, getting primed for the next assault. No matter how much I wished for a new surgical solution, I felt in my gut that he was right.

After several conversations with Dr. Isacoff, at UCLA, and several of his patients, I decided to trust his vast experience and innovative approach to long term chemo therapy. This meant traveling to work with him, but with the urgency of how fast my tumor was growing I knew I had to make a smart decision fast, no matter how inconvenient. Fortunately, after we saw that the protocol was working he let my local oncologist follow his lead with treatments near my home as well.

I am happy to report that after six months under his care my cancer markers are down to 56 and my last CT scan in July showed a 60% reduction in tumor mass. I struggle at times with the side effects of the therapy, I get cranky and discouraged, but mostly, I have learned to take one day at a time. There are still enough days in a month that I feel well enough to eat heartily with friends, work in my garden and walk in the woods. While I hope to survive long enough for a breakthrough to a cure I accept that my life, at least statistically speaking, will probably be far shorter than I had expected.

I have survived for two years! For this I am immensely grateful because they have been two years in which I truly know I am alive. I take in the world with an awareness I never had before this encounter. Each season, I know it could be my last. I take in the beauty of life like nectar – like the blessing it is.

I am Gigi. I’m a very private person, so my sharing this information isn’t easy. I was diagnosed on October 6, 2006 with Stage 2 pancreatic cancer, had the Whipple on October 17^th, began 6 months of chemo on my 41st birthday – December 15^th, 2006. My margins & all 29 lymph nodes are clean. It’s been quite the journey, but I’m strong & happy & healthy.

I do not have cancer, I had it; it’s gone & I’ve got the scar to prove it. I am NOT a cancer victim, but a survivor. You can bet your a** (& anyone else’s) that I’ll be inhaling chocolate cake & French fries @ my 80^th birthday party!!!

Upon my diagnosis (after getting up off the floor) I had to laugh because, while I knew there’s a pancreas “in there” who really knows what it does or that cancer of that organ can be 95% fatal? Treatment is typically palliative because it’s rarely caught early, but I was able to have the surgery – the Whipple, which removes part of the pancreas, the gallbladder, part of the stomach, & part of the lower intestines. I was out of bed & walking the morning after surgery. I was home in a week. Now 12 months after chemo & nearly 2 years after surgery, I’m still shaking my head in disbelief. Even still I’m thriving & feel well, overall, ramping back onto the highway of my life with such completeness that my doctors are astounded. My research on various cancer inhibitors was exhaustive in the 10 days between diagnosis & surgery, and as such, I take approx. 20 vitamins and supplements daily. My diet includes nothing fried, very little fat, & consists of “no meds” – no Meats, no Eggs, no Dairy, no Sugar. Ostensibly, cancer cells feed on sugar, which is why one of the most accurate diagnostic tests, the PET scan, works. During the scan, glucose is injected into the body and the scan pinpoints cells that absorb the glucose at an accelerated rate.

Three of the key elements that have sustained me throughout this ordeal are my sense of humor, scathing wit, & dear friends and family. If there’s funny to be found, I’ve got it. If there’s irony and insanity, count on me to point it out…while rolling on the floor laughing at its hilarity, nudging my loved ones to do the same. I marvel that I am able to hold onto these things and keep my head in a positive place. It’s not an easy task considering that pancreatic cancer has a high rate of recurrence — only approx 2% – 5% live beyond 5 years of diagnosis, with most perishing within the first year. I don’t like those odds. They suck. This is my new reality, the strong possibility of recurrence. There are times when I feel nearly hobbled by fear of the unknown, but fear of what I do know is emotionally crumbling. Yet I remind myself every moment of every day that I am a statistic of one. There are 2 people whom I’ve heard of who are 30+ years post-diagnosis and a handful who are 10 – 12 years past.

My morning mantra is:

• I am cured/healed.
• I am strong.
• I feel great.
• I eat & think healthy 24/7.
• I am living to be a healthy, happy, vital 80-year old.

Occasionally, I have one of ‘those days. Funny ’cause that kinda day usually doesn’t begin until late afternoon. I don’t know what happens, where it comes from, or why. Something triggers it &, though it’s often fleeting, it shakes me to the core.

I have “the thought.” Shyt!!! I’m going to die. What the heck happened? How did/could this have happened?? When “the thought” occurs, it’s accompanied by a feeling of lightheadedness. My heart feels like it’s regurgitating & reswallowing itself repeatedly. It’s surrealistic and uncomfortable on a physical and emotional level. And then it’s gone. Not as quickly as it came, and it leaves a residue that lingers for several hours or so. As it diminishes in intensity, the thought that inevitably follows is this:

Shyt. everybody’s gonna die. LOL. Before the cancer diagnosis I knew I’d die someday, so what’s the difference? LOL. That’s reality. It is what it is. & what it is that I’ll be trying to figure out on my 80^th birthday how to blow out 80 birthday candles. We’re having French fries & chocolate cake…& a 28-year-old stripper. Make sure you save your singles.

Castaic, CA November 15th 2009 – Honoring November as National Pancreatic Cancer Awareness Month, Road 2 A Cure, a 501(c)(3) non-profit organization dedicated to raising awareness of and funds for scientific research on pancreatic cancer, expands its websites capabilities to better engage and educate its audience.  Included in the launch are the much anticipated details and schedule of Road 2 A Cure – The Tour. A 50 state motorcycle tour and web documentary that will promote pancreatic cancer awareness and research. 

Chris Calaprice, six year pancreatic cancer survivor and ongoing chemotherapy patient, hits the road on February 20th, 2010.   The objective of Road2ACure – The Tour is to travel through all 50 states by motorcycle, covering 42,000 plus miles, in order to deliver a message of urgency and hope throughout the country.  The entire journey will be documented by a camera crew. Pre-recorded segments will be posted at the Road2ACure website. Why 42,000 miles? “I am riding approximately one mile for each person, in the US, who will be diagnosed with pancreatic cancer this year alone” answers Chris.

It is Road 2 A Cure’s mission to Accelerate Change, Inspire Hope, and Change Lives.  By taking the message of awareness and hope on the road and accessing the media and social networking tools at their fingertips, Road 2 A Cure will create a loud and very public message of hope for survivors, their families and volunteers in all 50 states. In addition they will drive home the necessity for progress in early detection, treatment and finally a cure. They will organize and attend events, rides and rallies throughout the country.  At the same time, they will be visiting pancreatic cancer survivors, caregivers, volunteers, researchers, grassroots activists, policy makers, oncologists, medical centers and local and federal legislators.

Highlighting the ride’s significance, Chris explains, “We need to make some noise and shed the spotlight on this bogeyman cancer.” He goes on to say that, “we must speak for those immersed in the fight for survival, for those who have lost the battle, and for the 42,000 (and rising) other Americans who are expected to be diagnosed this year. I believe in the power of people to make change through action. It is time to act now.”

Pancreatic cancer is the 4th leading cause of cancer death in the United States, yet its funding accounts for less than 2% of the National Cancer Institute’s annual budget. Of those diagnosed, only 25% will survive more than a year. Only 5% will survive beyond 5 years. Actor Patrick Swayze and lecturer Randy Pausch both lost recent battles with pancreatic cancer, drawing the deadly disease to the public’s attention. Because pancreatic cancer is one of the few cancers for which survival has not improved over the past 25 years there is the need to raise such awareness and funding now.

Jennifer and Chris Calaprice became involved in the fight against pancreatic cancer in October of 2003 when Chris was diagnosed. Supported by friends, family, the community, and the Pancreatic Cancer Action Network, they launched their 1st motorcycle ride. Its huge success spurred them to want to do more and have a more far reaching impact. Road 2 A Cure, a 501(c)(3) non–profit organization, was their answer to making their own fight have a global impact in the war against cancer.

For more information on Road 2 A Cure – The Tour– A 50 State Motorcycle Tour & Documentary or to receive information on donating, please visit us online at www.Road2ACure.org.or contact us at info@road2Acure.org