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,