Survivor Riding 42,500 Miles against pancreatic cancer

Hey, Baby, I'm a Rockstar!!

Filed under: Gigi's Blog — Tags: , , — Gigi @ 12:40 pm February 7, 2010

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!!!

Ain't Life Grand??? (Everybody say, "Yes!")

Filed under: Gigi's Blog — Tags: , , , — Gigi @ 2:49 pm December 22, 2009

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 44th 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!!!!


Hello my name is Chris Calaprice, I am a survivor!

Filed under: Survivorship — @ 2:34 am November 20, 2009

chrisI 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 4th 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 1st 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.

I am Nora Calaprice, mother.

Filed under: Survivorship,Your Stories — Nora @ 10:20 pm November 16, 2009

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.


Meet Jill

Filed under: Survivorship — @ 10:15 pm

Survivor Jill

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 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

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,


Meet Kay

Filed under: Survivorship — @ 10:10 pm

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.

Meet Gigi

Filed under: Survivorship — Gigi @ 10:07 pm

GigiI 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 17th, began 6 months of chemo on my 41st birthday – December 15th, 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 80th 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 80th 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. :)