Survivor since 2006…
Something had gone terribly wrong that fine autumn in the south of France. Food and wine had been a passion and a vocation for so many years and this epicurean pilgrimage had been in the making for nearly as long. By Provence I was no longer eating. I had been nauseous, something that was not normal for me, and even worse, constipated, which as my family reminded me, was never an issue. The grape harvest in Burgundy and the strolls through fabled Paris neighborhoods were memories to be treasured. However, as I flew back to my life in the Colorado mountains, I had a sense things were not going to get better.
Arriving home, a cleansing diet for my liver and colon seemed to make sense. As I was not eating much at that point, taking sustenance from fruit and vegetable juices would have more than just a cleansing benefit. I enjoyed the good fortune of being able to walk with my dog to work everyday, which was managing and directing a bookstore. It was while walking to work on an early November morning, it had been snowing, that I took a moment to gaze at the beauty of the surrounding mountains. I was immediately aware that my vision was out of focus. The mountains blurred as if I was looking through glasses that were a wrong prescription. Over the next few days the symptoms worsened. Additionally, my sleep was increasingly interrupted by my need to pass all of the liquids I was taking in. A vicious cycle had started with my need to drink major quantities of water throughout the day and night with the subsequent need to visit the bathroom regularly. A chance meeting with my friend and optometrist, Amy Cecil, had me in her office for an eye examine. The results of those tests indicated no pathology, however, as Amy suggested, “Fred, you shouldn’t be driving – your vision is that bad.” She wasted no time in calling my longtime primary care physician, Dr. Carl Schiller. In Carl’s capable hands, the tests he ordered indicated my blood sugar was raging out of control and my liver function numbers were pushing into the red zone. The fruit smoothies I was living on were certainly contributing to my elevated blood sugar, which was causing the distortion to my vision. There was every indication I had moved into adult onset type II diabetes. A decision was made to begin a regimen of daily insulin injections in an effort to get my glucose levels in line and also because the oral diabetes meds I might have been able to take in lieu of the shots metabolized through my liver and might adversely affect that organ, which was still functioning abnormally. Within a few days my vision returned to normal. I was sleeping through the night and in general feeling better than I had in a while. Then the itching began.
It started simply enough, some itching around my elbow and knee joints. By the holidays I was becoming virtually incapacitated with pathological itching. It would race across my body in waves and once I started – I’d scratch until I bled. My liver tests indicated it was still functioning abnormally. Dr. Schiller referred me to Dr. Gerard Tomasso, a local gastrointestinal specialist. My energy levels were still good. I was working my customary fifty to sixty hours a week and skiing from time-to-time. I had lost nearly 30 pounds since France, which I attributed to a closely monitored diet the result of the diabetes. This was now to become a game of medical “Twenty Questions.”
The testing began in earnest in January of ’07 with a multitude of blood tests checking for, amongst other things, the possibility of some form of hepatitis perhaps picked up from something consumed on my travels. Samples sent to Mayo Clinic and the Center For Disease Control ruled that out. External ultrasound scans indicated nothing out of the ordinary. Stool samples eliminated parasites. An MRI was out of the question due to a lifetime of breaks and bursts that had me filled with metal from head to ankle. However, a comprehensive, full contrast CT scan came up negative. Meanwhile, the itching was driving me to near madness and was not responding whatsoever to the limited number of medications available for treatment. Long hot showers seemed to provide the only temporary relief not only from the itching, but also from the onset of chills that had begun to plague me. I continued to lose weight, up to 3 – 5 pounds a week. My bilirubin count was still within the upper limits of normal with no signs of jaundice. The easy questions had been answered; the tougher ones now had to be asked.
The testing was going to become invasive and with that came risks. I decided to take a couple of weeks off from the testing in order to regroup and consider some of the alternative diagnosis and therapies that were available. But acupuncture provided no relief from the itching and Chinese and homeopathic therapies were going nowhere. I scheduled a liver biopsy to be performed in mid-February. As I was being prepped for that procedure Dr. Tomasso asked me, “If it wasn’t for the itching you wouldn’t be here would you?” I had to agree. I was still working as hard as ever and managing to get a day or two of skiing in. The liver biopsy, done externally and as an outpatient, came up with nothing. With more weight coming off and my bilirubin numbers going up it was time for an endoscopy. This procedure, done in an operating room, allows a physician to see first hand what is happening, which in my case included my stomach, duodenum, gall bladder, liver and bile duct. It was immediately apparent to Dr. Tomasso that my bile duct was not functioning due to constriction. He was able to place a stint in the duct, which opened it up and allowed the flow of bile from my liver into my digestive tract to begin again. The itching, called pruritus in medical terminology, was caused by the bile backing up in my liver due to the obstruction. The bile transformed to bile salts and was picked up and deposited throughout my body by my circulatory system. The itching was caused by the bile salts trying to “percolate” out through my skin. Within 36 hours the itching was to completely stop. Dr. Tomasso was relating all of this to me bedside in the hospital later that evening. There were only a couple of questions remaining to be asked now, “What’s causing the bile duct obstruction, doctor?” But I already knew the answer.
Adenocarcinoma of the pancreas, a cancerous tumor growing in the head of my pancreas – pancreatic cancer. That possibility couldn’t be grimmer. The pancreas “silently abides the presence of a growing cancer for sometime. When symptoms finally do manifest they frequently mirror those of other disorders,” as in my case, “so that by the time the tumor is identified, in three out of four cases it has spread beyond the pancreas.” This was one of the “put your affairs in order because you only have six months to live” kind of cancers. Time was of the essence now and we needed to verify this diagnosis immediately. That testing could be done at the University of Colorado’s Medical Center in Denver at the Anschutz Cancer Center. Within a week I had an appointment with Dr. Raj Shah, a leading practitioner in the field of pancreaticabiliary endoscopy. He performed a procedure using an endoscope with ultrasound imaging capabilities. The images derived from that instrument indicated a tumor present in my pancreas. A fine needle biopsy, which was able to be done at the same time, left no doubt about the diagnosis. A PET scan showed my pancreas glowing white hot, but apparently no cancer metastasizing anywhere else in my body. Dr. Shah’s testing indicated a tumor exceeding 4 cm. in size, but showing negative margins. In other words, the cancer had apparently not spread beyond the pancreas and the tumor had not yet wrapped itself around the major blood vessels running through the pancreas. There was a chance this tumor was operable.
Much is said of the need to be one’s own advocate when fighting cancer. I would suggest one has little choice to be anything but as informed and involved as possible in waging what is a battle for one’s life. By taking advantage of today’s wealth of medical information available through the thousands of health oriented websites and blogs on the internet as well as a steady stream of books on cancer being published every year, it was relatively easy to gain a tremendous amount of information on what it was I was facing. What became immediately apparent from my research was that in order to have any chance of living more than six months I needed to find the most experienced surgeon available. I needed a doctor who regularly performed the very technical and complicated pancreatic resection surgery known as the Whipple procedure (named after the doctor who pioneered the procedure). Furthermore, that surgeon needed to be surrounded by a top-notch multidisciplinary oncology team to help plan my treatment and that treatment needed to take place in a state-of-the-art healthcare facility that supported leading edge cancer research including a broad range of clinical trials. The choice, for me, seemed obvious. Dr. John Cameron, who had been chief of surgery at Johns Hopkins Hospital and who has specialized in and performed more Whipple procedures than any doctor in the world, was who I needed to see. The Multidisciplinary Pancreatic Cancer Clinic that is part of the Sol Goldman Pancreatic Research Center, which in turn is part of the Sydney Kimmel Comprehensive Cancer Center at the renowned Johns Hopkins Hospital in Baltimore, was where I needed to be. Dr. Greg Stiegman, the division head of the G.I. Tumor and Endocrine Surgery service at the University of Colorado Anschutz Medical Center and a noted surgeon himself, to whom I owe a great debt of gratitude, was kind enough to refer me to his friend and colleague, Dr. John Cameron at Hopkins. Dr. Cameron and his team agreed to see me. Medical records were forwarded, dates were set and I was headed to Johns Hopkins.
There was no doubt I couldn’t get to Baltimore fast enough. My health was deteriorating at an alarming rate. I had lost nearly 60 pounds since the onset of symptoms in France five months earlier. I had to have the stint in my bile duct replaced as it had failed due to the relentless, ever-increasing growth of the cancer. Pain had become an issue and along with the continuing problems with the stint I had to be readmitted to the hospital three days before I was due to take a commercial flight to Baltimore for the surgery. On Friday, the day I was to be on that jet to Hopkins, I was flat on my back in the hospital with a significant fever, a lot of pain and a very concerned Dr. Tomasso. A series of phone calls between Dr. Tomasso and Dr. Cameron and his team at Hopkins, in which Dr. Cameron stressed the urgency of getting me to Baltimore and in his care, led to the decision to release me for travel despite my condition. My employers and good friends, Clay and Louise Bennett, were adamant that I make use of their corporate plane, which I departed on along with my son the next day. The last of the “Twenty Questions” was about to be answered . . . life or death?
My memories of my pre-surgery time at Hopkins are a collage of faces, scenes and senses; my very concerned family and friends who had traveled to Baltimore to be with me, the flurry of admitting staff, nurses and medical technicians, the stream of interns, residents and physicians that are part of the dynamic of a major teaching hospital. The surgery took Dr. Cameron and his team over six hours to perform. A pancreatic resection or Whipple procedure is a major surgical undertaking. My gallbladder was removed. The lower part of my stomach was also removed along with the duodenum, which connects the stomach to the small intestine. The bile and pancreatic ducts, which drain into the duodenum, were re-plumbed to drain into the small intestine, which had been surgically attached to the stomach. The rerouting and reconnecting of all these major and minor organs and the circulatory support systems is surgery requiring skill and teamwork of the highest order, all done to eliminate as much tissue as can be removed that might contain cancer cells. Dr. Cameron personally briefed my family on the outcome; a four and a half centimeter cancerous tumor had been removed along with the upper part or “head” of my pancreas. The tumor had not involved itself with any of the major blood vessels that run through the pancreas, which is a one of the reasons this cancer is often times found to be inoperable. Twenty three lymph nodes surrounding the pancreas were removed of which two were found to be diseased by biopsies performed at the time of the surgery. I was in critical but stable condition with the next challenge being the potential for complications due to the complexity of the surgery.
My first post-surgery memory was waking up in the intensive care unit with a nurse asking me my name and if I knew where I was. Upon answering those questions correctly, she pointed at a chair next to my bed and informed me that Dr. Cameron was expecting me to be up and sitting in that chair sooner than later. I remember laying there and muttering, “You are kidding me, aren’t you?” She wasn’t and with some help I was up and sitting within hours after my surgery despite an incision that ran from my sternum to three inches below my navel. This turned out to be the Cameron “mantra,” get up and get going. My three weeks of post-op recovery consisted in large degree of my mornings, noon and nights spent dragging my I.V. cart along with me as I walked literally countless miles through the labyrinth of hallways that weave their way through the Johns Hopkins Hospital complex. As hard as it was initially, I believe that Dr. Cameron’s regimen played a key part in my recovery, both physically and psychologically. Not that my post-op was without complications. When I started to eat solid foods again, my digestive tract had a difficult time assimilating fats. This required me to go back on intravenous nutrition intake to allow additional healing to take place. This added about a week to my hospital stay. By the last week of May I was on my way back to Colorado.
My strategy for fighting this cancer was based on a three part offense I had formulated in my initial research. I had made it through the first battle with the surgery at Hopkins. I felt it was important to not only cut out the disease, but to also follow up with a “one-two punch” to eradicate any remaining cancer cells.This combination consisted of chemo and radiation therapy. I chose to do this regimen in Colorado as it allowed me to stay involved with the busy summer demands of my business. My chemo treatments consisted of a combination of Taxol and Gemzar, which was administered through a port I had surgically implanted just below the skin in my upper chest. A good decision that eliminated the potential of problems from intravenously administering these strong chemicals. My schedule was every Monday for six weeks. The radiotherapy, which was conducted at the Shaw Regional Cancer Center in Edwards, Colorado under the direction of Dr. Patricia Hardenbergh, consisted of treatments five days a week for six weeks. I was able to drive myself the one hundred and twenty mile round trip each day through the first five weeks of the treatment; however, by the sixth week I needed someone to drive me. The side effects of the chemoradiation had caught up with me. I needed to nap every afternoon, I had become mildly nauseous constantly and my appetite had dropped off considerably. My weight was down to a low of one hundred and ninety four pounds from a high of two hundred seventy five pounds prior to the onset of the disease. But in comparison to the many other patients I met who were undergoing similar treatments, my side effects were mild. I did not lose my hair, although it did thin considerably. Other than one or two occasions, I was not sick to my stomach and I was able to eat pretty much through the entire six weeks as well as the weeks following the treatments. I made a decision prior to starting these treatments to try to lessen the impact of the side effects through the use of marijuana. Several people I spoke to who had gone through chemo and radiation highly recommended I consider this as a real option to help lessen those effects. I can state unequivocally that I would have suffered side effects, especially nausea and loss of appetite, far greater than I did without using cannabis. I strongly support, from first-hand experience as a cancer patient, the use of medicinal marijuana. There are, however, side effects from chemotherapy that can take up to a year to get over. This can include a vague but real malaise and the slow to diminish effects of what is known as “chemo-brain.” This phenomenon can best be described, in my case, as a general mental spaciness, a dulling of the sharp edges of one’s mental faculty.
With the cancer surgically removed and every effort made to eliminate any further cancer cells through the chemoradiation treatments, it was on to the third part of my cancer fighting strategy. I felt it was important to find a clinical trial program that focused on eliminating any free pancreatic cancer cells that might be lurking somewhere in my body waiting for an opportunity to metastasize sometime in the future. Part of my reasoning for seeking out Dr. Cameron and Johns Hopkins Hospital was a clinical trial being conducted at that facility, which was showing real promise. Dr. Dan Laheru and Dr. Elizabeth Jaffee with key team members including Barbara Biedrzycki and Beth Onners had been working on a pancreatic cancer vaccine. A layperson’s explanation for a very complex bio-genetic concept is to imagine a pancreatic cell that has become cancerous due to a series of genes that make up a segment of that cell’s DNA structure, whose purpose is to provide immunological defense against that very cancer, somehow having been “switched off.” The objective of their research has been to genetically reengineer those genes to “switch back on.” This cutting edge approach to cancer therapy is happening with a number of cancer types and holds great potential for significant progress in the fight against cancer. I had “one foot in the door” as a previously treated Hopkins patient, but I needed to be cancer free as determined by a series of high resolution CT scans to occur six weeks after the conclusion of the chemoradiation treatments.
In September of ’07 I was back at Johns Hopkins where, if the CT scans showed me to be cancer free, I would remain for five days of testing (primarily blood work) after the injection of the vaccine. The injections were comprised of two shots in each thigh and two shots in one of my upper arms. The lead-up to the CT scans was nerve wracking . . . had the cancer returned? I met with the doctors after the test results had been reviewed and was relieved (an obvious understatement – there are no words to express that moment) to learn they had found no cancer and that I had been accepted to be part of the ongoing clinical trial. The September appointment was followed by three consecutive monthly visits for additional vaccine injections. Thereafter, the protocol calls for me to return every six months indefinitely for CT scans to determine whether the cancer has returned and for another round of vaccine injections.
June ’08 arrived and I was back for my six month check-up as part of the pancreatic cancer vaccine clinical trial. It had been over a year since Dr. Cameron had performed my surgery and nearly twenty months since the first symptoms changed my life that autumn in France. My health had stabilized as had my weight. I was skiing and hiking regularly and working more than full-time. The CT scans were scheduled for that Monday morning at 9:00 am. As I lay there passing back and forth through the eye of the machine that would foretell my future, I heard that old question once again being asked, what was it going to be . . . life or death? But I already knew the answer – life had chosen me.
Postscript: Later that afternoon on that same Monday in June of ’08 I was sitting in the oncology waiting room at the Kimmel Cancer Center at Hopkins waiting for my vaccine injection appointment. I’d spent some time in that waiting room over the last year. I found it sobering and often emotionally difficult to watch the coming and going of so many very sick people. They were old and young, of every race and persuasion and often accompanied by a spouse, family member or friend. My heart ached for their plight and I was mad as hell at the disease that had brought them here. A big summer thunderstorm had rolled into Baltimore that afternoon and the lightning was flashing and rain pounding at the windows. The lights in the waiting room flickered once or twice and then went out. Somewhere in the dark a voice called out, “We’re not going yet!” There was silence for a moment and then an incredible laughter that spread across the room as the lights came back on. In that moment I realized that I was not amongst victims, but was in fact, surrounded by heroes. Heroes one would never recognize, each in their own way waging a warrior’s effort. My spirit soared on the energy of all those who fought this good fight whatever its outcome. In their strength I found mine.