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I Shall Press On Regardless
It had been a typically bright, sunny south Florida morning in May, 1997. My sixteen-year-old, first born son and I had flown from our home in St. Thomas, Virgin Islands to Miami the day before for medical appointments. It was a routine, every six months trek that we had been making ever since he was a two-year-old. He was to see his pediatric cardiologist first and later that day I had piggybacked onto his schedule an appointment for myself with one of the resident nephrologists.
Joseph was born with a congenital heart imperfection that we had been following at Jackson Memorial Hospital in Miami since his diagnosis in 1983. His doctor advised us that morning that his aortic stenosis (a narrowing of the aortic root which eventually damages the aortic valve) was nearing the point when surgical intervention would be necessary. It was not unexpected but was nevertheless sobering news. He was destined to undergo open-heart surgery at Jackson just eighteen months later and then again at Duke University Hospital when he was a twenty-four-year-old law student there. He is now an associate at an international law firm in Washington, D.C. Today his loving heart beats with a Dacron aorta, a titanium aortic valve and a donor pulmonary valve. He is recently engaged to Erin Nolan, a lovely and very special woman whom he plans to marry one day soon. He is thriving in every way.
I was seeing the nephrologist because of a newspaper article I had read, entitled “Hepatitis-C, the Silent Killer,” in USA Today. From the time I reached the age of majority, I had been a regular blood donor until six years previous. After a routine donation, I received a polite letter from the American Red Cross informing me that a just developed blood test had shown that I had been exposed to what was then known as non-a, non-b hepatitis. My blood donating days were over. I took the letter to my family physician who, upon retesting me confirmed that I did test positive for the virus that causes the inflammatory liver disease. Fortunately my wife Debbie tested negative. I did not fit into any of the risk categories and it remains a mystery how I was exposed. Very little was known about this new strain of hepatitis then and my physician advised that there was really nothing to do but try to take care of myself and live a healthy lifestyle. I basically filed the information away and forgot about it. Only five years later, when I happened upon this newspaper article did I discover that the virus, now known as hepatitis c was responsible for a progressive disease which if unchecked could damage or destroy the liver. It has since also been causally linked to the development of liver cancer. I took the article to my family physician who ran a series of blood tests. They revealed extremely elevated levels of several enzymes the liver releases when it is inflamed. He recommended I consult a nephrologist on the mainland and I availed myself of Joseph’s upcoming appointment to seek that consultation.
Dr. Rajender Reddy examined me that day and pronounced me a very healthy and fit man of forty-six. His own series of tests reconfirmed the presence of the virus in my blood and also the elevated liver enzymes. Although there was still no treatment for the disease, a clinical trial of a combination of two drugs was being conducted at Jackson and, in a stroke of luck, Dr. Reddy happened to be conducting it. He pronounced me an ideal candidate for the trial and, due to the requirement that participants have biopsy confirmed hepatitis-c and the logistics of my living 1200 miles away, Dr. Reddy pulled some strings and got me scheduled for a laparoscopic biopsy the following day. He also got me squeezed into the schedule for a sonogram (a prerequisite of the laparoscopy) that afternoon.
That is how I had found myself in that tiny examining room an hour or so later. From the moment the mass was discovered, events began to unfold at a fast and furious pace. All discussion of hepatitis-c was tabled and I was scheduled for surgery to remove the mass as soon as possible which was to be ten days later.
Joseph and I returned to our hotel room to call home with the news. I sensed he was observing me, trying to gauge my reaction to see if I was going to freak out. I remember being keenly aware that with his own surgery now on the horizon, Joseph would be modeling his coping behavior on the example I was about to set for him. As a young parent I had quickly learned that children are more apt to follow parental behavior than parental instructions on how to behave. Thus, the calmness and courage that I was hoping to project would I also hoped be a guiding light for his own, much more serious surgical experience. We called Debbie and as matter-of-factly as possible explained what had transpired that day and what was going to be happening in the days to come. The next day we returned to St. Thomas. Debbie and I began to make arrangements for the care of our children and home and, ten days later, I was back in Miami with my best friend and lover at my side as I was rolled away to surgery for a radical nephrectomy.
I believe the course of one’s life is primarily determined by the thousands of decisions one makes. There are big ones and small ones, but they are all significant, albeit some more than others. I have made many unfortunate choices along the way but the wonderful life I am blessed to lead is due in large part to the fact that I aced the critically important ones. There can be no question but that the best decision I ever made was to be attracted to, fall in love with and marry my beloved wife Debbie. We had been married a mere twenty years when these events began to unfold. She had already blessed me with my three priceless gifts, my children. But now she was about to reveal to a new and profound degree the depth of love she harbored for me. I could write 100,000 words and still not say enough about her loving care and support of me during this ordeal and all that followed. She became my nurse, my advocate, and my fierce protector. She slept on a chair every night while I was hospitalized, rarely leaving my side, and all the while anticipating and seeing to it that my every need was met. No man was ever more fortunate a husband/patient than I. Her loving and tender care of me continues to this very day. Were I even to achieve immortality, I would not have time enough to adequately thank her.
The tumor was malignant as expected, but the lab tests indicated that the margins were clear. The doctor, and thus I (always the cockeyed optimist) had every expectation that I was and would remain cancer free. Nevertheless, it was recommended that I arrange to have an oncologist follow me just to be on the safe side. My recovery from the surgery was relatively smooth. Three months later I returned to Miami and Dr. Reddy, prepared now that that little cancer complication was taken care of to proceed with treating the hepatitis-c. I was thus quite surprised when he gently advised me that, as a cancer survivor, I no longer qualified for the study. Compassionate fellow that he was though, he told me that he could prescribe the one F.D.A. approved drug; a relatively new one called interferon and could also provide me with information on where I could acquire the other drug (ribivirin) from the production facility in Mexico. In another irony, interferon was then also being used as a prophylactic treatment following surgery for kidney cancer.
I returned home with the prescription for interferon and after a sustained effort, located the one English speaking official from the Mexican facility that produced ribivirin. She agreed to Express Mail the drug to me in the Virgin Islands. My insurance would cover only the interferon, but I was more than happy to pay the not insignificant cost of the ribivirin. Nine months into that year of treatment, the combination of drugs was approved by the F.D.A. for the treatment of hepatitis-c under the brand name Rebatrol, and I was then able to secure it from my local drug store, covered entirely by my insurance. The odds of success on these drugs were not good back then. Only fifty percent of patients had any response, and only fifty percent of those had a complete response (meaning apparent elimination of the virus from the patient’s bloodstream). I had only a one in four chance of completely destroying the virus.
It's not an easy treatment. The thrice-weekly interferon injections that I self-administered produced an immediate side effect akin to the worst case of the flu ever experienced and which lasted almost until the next injection. The ribivirin had its own host of side effects, most notably the suppression of my red blood cell count which produced a profound, chronic and almost disabling weakness and fatigue. Nevertheless, I continued to work part-time for most of the year. The kindness of my colleagues through generous donations of sick leave enabled me to carry on with their help and support. By the end of the year of treatment I weighed a cadaverous 150 pounds, down from 180 and spent most of my time in bed. But, in another of my strokes of incredible luck, after the year of treatment, the virus could no longer be detected in my blood. Chalk up a medical miracle for Mac. Numerous periodic follow-ups in the ensuing thirteen years have always produced the same amazing results, no virus detected. I have since known numerous friends and colleagues who were not as lucky as I, and who have either become disabled, are on liver transplant lists, or who have died from the liver cancer into which hepatitis-c progressed.
After the surgery, I became the patient of Dr. Pasquale Benedetto, a Memorial Sloan Kettering Cancer Center (“MSKCC” or “Sloan”) in New York City trained oncologist who began to follow me at the Sylvester Cancer Center at Jackson. I continued to travel there, first at three month intervals, and eventually at six month intervals with clean check-ups every time. I was excited for the five year check-up since most laymen, if not all oncologists, consider being cancer free at five years as tantamount to being cured. Except my five year check up did not go according to plan. When Dr. Benedetto entered the room with the test results that day, he calmly informed me that my cancer had come back, that there were two “spots” on my pancreas suspicious for metastases and that, furthermore, on review, the radiologist determined that they had actually been there a year before but had not been recognized.
I remember asking, “What now?” He responded that I should have surgery to remove them, and sent me across the facility to a surgeon who quickly examined me and the tests, and scheduled me for a “Whipple” procedure, where part of the pancreas is removed and the rest preserved so that the patient does not become diabetic. His attitude was almost cavalier and did not inspire a shred of confidence in me. I recall walking away from the office of this surgeon and sitting down in a hallway. I have no idea how long I sat there before experiencing a moment of clarity. Suddenly, I knew what I needed to do. I found my way to the several different offices where my records were kept, collecting copies of them all. I cancelled the surgery and have never been back to Sylvester.
I wanted a second opinion and recall being torn between Sloan and the Mayo clinic where my Dad had been treated seven years previous for heart problems. The reputations of both facilities were superb. I eventually decided to travel to nearby Jacksonville, Florida to the Mayo Clinic satellite facility they operate there. I brought along my test results from Miami and was assigned to an oncologist who had very recently joined the staff. He shared with me that his previous job had been as a medical researcher. His inexperience in dealing with actual patients quickly became apparent. First, upon viewing my chest x-ray with me, he asked if I had pectoral muscle implants. If he was joking, I failed to see the humor. Next, he proposed to arrange for the performance of a combination surgical biopsy and Whipple procedure. But when he attempted to schedule the surgery, off-handedly mentioning that the “top gun” surgeon was on vacation but this other guy would be O.K., I had seen and heard enough. Once again, I gathered my test results and fled the scene, never to return. By now my quiet determination to get the best treatment available was being replaced with a gathering sense of despair and desperation.
Finally, I did what I should have done in the first place and headed north to Sloan. A friend offered her apartment on the Upper East Side near the hospital. Debbie joined me in time for my appointment. Of course, the first thing they wanted to do was perform their own battery of tests. When after their completion we met the surgeon, he explained that the CT scans revealed not two tumors in the pancreas but five, plus another one on the remaining kidney, and a suspicious nodule in the lung. He told us that the cancer was inoperable, that the tumors in the pancreas were located in such a way that removal of them all would result in no portion of the pancreas being capable of preservation, and finally, that even removing all of the tumors would not in their opinion “affect the ultimate course of the disease.” I interpreted this to mean that the cancer cells were now lurking throughout my body and thus, removal of any tumor or group of tumors was not going to make any difference.
How I asked, was it possible that the doctors in Miami had not detected the full extent of the reoccurrence? It was only then that I learned that not all CT scans are equal. The results from literally years of tests in Miami had come from about forty-five “slices” of CT images of my abdomen. When I was tested at Sloan, they surveyed the same area with 300 “slices.” Their scans were simply much more detailed and thorough. Who knew? I had also to ask what would have happened if I had agreed to the immediate surgery proposed in Miami? “We would hope they would have turned back after discovering the true extent of the disease’s spread,” he answered. This was a lot of stunning information to absorb. I had a sense that a darkness on my periphery was closing in on me, but the worst was yet to come.
I must have given them a good suppressed laugh when my next question was: “Since I am training for the New York City marathon a few months from now, could I continue to train and run it?” They must have thought the cancer had invaded my brain, but the doctor said he knew of no reason why not. In fact, that November, cheered on by my entire family at the finish line, I did complete the New York Cit marathon in 4 hours, 38 minutes and 37 seconds. That time remains, despite three more tries, my personal best.
It was after this consultation that I was referred to Dr. Robert Motzer, a medical oncologist who I had no idea at the time was and remains one of the preeminent kidney cancer specialists in the nation. He met with me the following day and, within ten minutes reiterated that my cancer was incurable, adding that the average survival was eighteen months and that the odds of surviving five years were only one in ten. That was the moment that it all came crashing down on me, the knowledge that I was likely going to die from this disease, and probably soon. The darkness I had been warding off all but developed me.
We were both in shock. I recall walking back to the apartment with Debbie and telling her I wanted to be alone for a while. I walked on the short distance into Central Park, to a bench near a picturesque pond near the Seventy-Second Street entrance where model sailboats were gliding back and forth on the mirror smooth surface. I tried to conceal my tears (which had finally come) as best I could and sat there for a long time watching all the people who passed me by, their lives apparently so normal, so not threatened, so blissfully mundane. I resented the older people because they had the privilege of getting to grow old and I would not. I resented the smokers intensely because they were willingly poisoning their bodies while I who had done everything possible to save my life was going to die. I felt bereft of all hope, and the black despair that had settled upon me like a moonless night was almost intolerable. I didn’t perceive it then, but I had begun to respond to this crisis in an unfortunate way that I regret to admit I remain prone to even today. This impulse makes me want to isolate myself and push away the help offered by others. An inner voice whispers to me that no one can possibly understand or help me. “You are alone and hopeless,” it intones.
We remained in New York for additional tests (principally an MRI of the brain to rule out spread to that location) and a confirming biopsy. I have long struggled with establishing and maintaining a conscious contact with a God of my understanding. My analytical mind is the primary obstacle. But, on this day, a week or so after the fateful meeting with Dr. Motzer, it would have been hard to deny that a higher power was watching over me for it was at this desperate point that an angel appeared disguised as a middle-aged family friend. I say appeared because he kept calling and calling the apartment where we were staying. A high school Music and English teacher, he was spending his summer nearby on a Humanities fellowship. I made serial excuses why I couldn’t see him. He saw through it all, and on this day he simply showed up at our door. He and I are both recovering alcoholics. We regularly saw each other at the same twelve step meetings in St. Thomas. He was then sober twenty-five years and at that time I had been sober for twenty-one years. My friend came armed with a Bible and the Big Book of Alcoholics Anonymous. He insisted that we go to an A.A. meeting nearby, and to many more over the course of the next few weeks. He taught me that I had to discipline myself not to project into the future, but rather to live my life one day at a time. He taught me to focus on just the next right thing to do and not the next ten, 100, or 1000 next right things to do. He taught me to pray and to ask God for help, (even if at first I was only acting “as if” I believed). He patiently schooled me in all of these tools of the program. As I began to employ them, I gradually learned to cope in a healthy way with what faced me and, of equal importance, to stop denying those who wanted to help me the joy that coming to my aid would give them. I will always believe this angel is a principal reason why I am still alive eight years later. I try to thank him by sharing what he taught me with others who are similarly situated.
Dr. Motzer scheduled me for an endoscopic biopsy attempt whereby a scope is threaded down one’s esophagus (under general anesthesia) and into the stomach, in an effort to biopsy the pancreas tumors by inserting a needle through the stomach wall into the pancreas and into a tumor. It proved ultimately unsuccessful. While I knew that Sloan was one of the best cancer treatment facilities in the nation, it was a fairly impersonal place. [For all I know, it has changed since then.] Few people there ever knew my name or had any sense of my authentic self. I was habitually referred to by my medical record number. While some of the facilities were state-of-the-art, others were either run down or under major renovation. Dr. Motzer was one of the coldest men I’d ever met, and his emotionless pronouncement of my dire prognosis did not create in me a warm, fuzzy feeling for him. When I asked him about treatment, with a dubious look on his face he advised that there was only one and it had been found to work in just one in every ten cases. It was Interleukin 2, the high dose application of which had shown some marginally better results than a low dose protocol. He mentioned in passing a Dr. Janice Dutcher, who was administering the high dose version at a hospital up in the Bronx. I got the distinct impression that he believed pursuing that treatment was all but pointless.
In the meanwhile, since the first endoscopic attempt to biopsy the tumors had been unsuccessful, a second try was scheduled and performed the following week. The results were the same. After that the doctors decided that a laparoscopic surgery would be necessary. Incredibly, it could not be scheduled for six more weeks. By now, I had spent the better part of three months trying to confirm the obvious. Being told essentially to go to the rear of a six-week-long line for the needed procedure was the final straw.
Several friends whose opinion I respected had encouraged me to consider the M.D. Anderson Cancer Center of the University of Texas (“M.D.Anderson”) in Houston. My frustration drove me to check it out. While I kept the surgical appointment at Sloan (as a back up) I used the interim period to fly to Houston to see for myself this fabled cancer center and to obtain another opinion. Located in an area south of the city center, M.D. Anderson is a part of what is referred to as the Medical Center where perhaps ten different major medical facilities are gathered in one centralized location. It is truly an amazing place. Skyscraping new facilities were going up seemingly everywhere and to this day, 8 years later, they continue to pop up like so many spring bulbs.
When I got there what I found could not have been more contrasting to my experience at Sloan. I was promptly assigned a physician in the genitourinary clinic and a patient advocate (a new concept for me) as well. A kindly volunteer met me in the tastefully appointed waiting area and escorted me to each of my appointments. In another of my continuing strokes of luck, a wonderful oncologist named Dr. Paul Mathew had been matched with me. When we met for the first time, we clicked immediately and I at once felt at ease for the first time since that fateful day in Miami which now seemed like a lifetime ago. At M.D. Anderson they employ a team approach. There was a notable emphasis on the patient’s perception of their experience I had not witnessed anywhere else. Here too, they wanted that biopsy and seemed confident that they would be successful utilizing the same endoscopic approach. I cast aside my doubts and agreed to let them attempt it. Unfortunately, when the results came in they were just the same as before, inconclusive. Although disappointed, my experience was otherwise very positive at M.D. Anderson. I decided to keep the appointment at Sloan, and returned there for the surgical laparoscopy. Apparently, I couldn’t move forward until the diagnosis was confirmed, but I remember thinking when I left Houston, that I would be back.
When I had departed New York City, my wife had returned to the islands in order to care for our youngest son, Elliott. On the other hand, Sloan insisted I have someone with me for the procedure, so Joseph, now a senior at Brown University in Providence, Rhode Island came down to New York on the train to be with me. I was still planning to run that marathon (by race day, November 3rd I had run 350 total miles in training), so I spent the evening before the surgery at a gym, getting in the scheduled eighteen mile run on a treadmill, all the while doing the surgery prep (similar in unfortunate nature to that for a colonoscopy). It was a memorable time for all the wrong reasons.
My surgical experience at Sloan was excellent. Upon arrival at the ambulatory surgical center, I was met by a three person “pain management team” who inserted the arterial line with virtually no pain perceived by me at all. That quality of care was representative of the whole experience that day. When I awoke, I was in a very small recovery area where Joseph soon joined me. In the bed across from me, a brain cancer patient was awakening from his unsuccessful surgery convinced that he was dead. Nearly the entire time I was there, his poor wife and successive doctors and nurses attempted to persuade him that he was in fact still alive. It served as an unexpected blessing for me as it gave me the gift of perspective, big time. When I had recovered enough to be released, it quickly became clear that my shoes had been misplaced. An hour later the search for them was still fruitless. Fortunately Joseph knows how determined I am so he aided me in a bit of a ruse wherein we kept bluffing the staff that other shoes were being delivered and that someone was going to pick us up down stairs and deliver us to our hotel. When we had successfully maneuvered ourselves out of recovery and down to the ground floor, an outside entrance came into view. We waved goodbye to the kindly attendant and made a break for it. Free at last, we walked (well, with me it was more like a hobble) the three blocks to our hotel on a chilly fall evening with me in those little hospital footie socks and nothing more. I only needed the prescribed Tylenol with codeine that day and the next. In a couple of days I was recovered enough for my son to head back to school and for me to fly home, my cancer finally confirmed. Lucky me.
After considering my options with Debbie, I made the decision to seek treatment for my disease at M.D. Anderson and so, as soon as I was fully recovered from the surgery, I headed back to Texas. I went over my options with Paul (endearing traits of his included his being comfortable with us being on a first name basis, borne of his natural humility, and also his being readily accessible via email). He agreed that the high dose interleukin 2 treatment was a reasonable way to go. I made arrangements to begin it in January, after my marathon run. So, in the cold of winter, I returned again to Manhattan and took the subway north to 223rd Street, almost to the end of the line up in the Bronx. I eventually found my way to Our Lady of Mercy Hospital and to Dr. Janice Dutcher. After putting me through a series of tests (stress, brain MRI, lung capacity), all of which I aced, they surgically implanted a “PIC” line on the under side of my arm which allowed administration of the Interleukin 2 directly into a vein above my heart. That night, with Dr. Dutcher watching me from my bedside like a mother hawk, they began the infusions of a series of boluses of the drug which would go on over a period of five days. There were a maximum number of boluses that could be given and of course, being the good alcoholic that I am (one is too much, a thousand never enough), my goal was to become the record holder. After each infusion, I would get an immediate onset migraine type headache and severe full body chills that had me vibrating in the bed. The toxicity of the treatments is best illustrated by the fact that I was given morphine every time after the first few infusions. It was not fun but I persevered, or you might say, pressed on regardless.
When I was preparing to leave for the hospital, the kids presented me with a framed picture of the three of them (which I treasure to this day) with a recording built in that played them singing the currently popular reggae song: “Don’t worry about a thing, cause every little thing’s gonna be alright.” Suffice it to say that no one entered my room without viewing that photo or hearing that song. Much to my delight, Joseph and Elizabeth surprised me after the first week, traveling down on the train to New York from Providence where by now both of them were students at Brown. They booked into a nearby motel and spent the entire weekend lifting my spirits with their lively jokes and antics. In our family, no one is ever permitted to take themselves too seriously, no matter how solemn the situation. We use humor as a device to help each other cope with tribulation. We trained our children well in this. Between giving me no end of grief because one of the nurses (not knowing Elizabeth was my daughter) mentioned in the elevator to a friend that the island fellow in I.C.U. (me) was “one sexy man,” to going down to the empty hospital chapel to make goofy faces at me on the closed circuit channel that was carried on the in-hospital T.V. network, they made me laugh until I cried, all the while feeling enveloped in the warm, comforting blanket of their love. God, how I adore those two jesters.
After ten days I flew home to St. Thomas, only to have to return a week later for the next and final round of treatments. Another “PIC” line had to be inserted, this time under my other arm, and then the boluses began again. This time the treatments were even more debilitating, but I recall making it through to nine of a maximum eleven possible infusions before Dr. Dutcher called a halt. When Elizabeth came down again, this time to assist with my release from the hospital, overnight with me in another generous friend’s apartment and get me to the airport the following day for the flight home, I was a mess. Little did I know that as bad as I felt, the worst had yet to come.
Within days of jetting home, I had begun to experience attacks of itching which would come and go in intense waves on various parts of my body…sometimes the abdomen, sometimes the back of my hands and sometimes random locations. They seemed to become more intense with each passing day. Neither the meds that had been prescribed nor anything else we did gave me any relief except the application of ice packs. It didn’t make the itching go away, but the numbing effect made the attacks somewhat more tolerable. I could not stand for water to touch my skin, so I could not bathe. Only the dry cold gave me any comfort. Thus, my sainted wife essentially maintained a conveyor belt type system of rotating ice packs during my every waking hour. This lasted for about six weeks, by which time I had lost a significant amount of weight and been all but bedridden for the duration.
I returned to Houston for tests about two months after the second series of treatments, only to be told that not only had they not worked, but that my tumors had actually begun to progress (grow) . It would have been devastating except for the fact that Paul had just returned from a kidney cancer symposium in Amsterdam, Netherlands, and had learned of a new study of a combination of two cancer drugs being carried out at a cancer center named for Sarah Cannon (the real name of one of the Grand Ole Opry’s famous comedic characters, Minnie Pearl) in, would you believe, Nashville, Tennessee. They were studying a new type of cancer fighting drug. Instead of killing all rapidly multiplying cells, (as had always been the approach of previous cancer chemotherapy drugs) these new targeted therapies attacked the disease by interfering with a tumor’s ability to generate the additional blood supply needed for it to grow. The process the tumors employ to do this is called angiogenesis and thus, the new drugs, anti-angiogenesis. These two were named, Avastin [which I note has recently received a negative recommendation from the F.D.A. for treatment of other types of cancers] and Tarceva. The big problem, Paul noted, was that to participate in the trial at Sarah Cannon, I would need to be in Nashville to receive the necessary infusions once every two weeks for the duration of my participation in the trial.
"Surely you couldn’t do that,” I remember him saying.
“Well, let’s see,” I replied (holding out my two hands to simulate the up and down motion of a balancing scale), “commute to Nashville every other week or die. Hmm. I think I’ll try to figure out how to commute to Nashville.” That is precisely what I did.
I traveled to “The Music City” as it is known soon thereafter and was accepted into the study. At the time I had no idea how I was going to finance or work out the logistics of this outrageous plan of mine. I just believed that if I supplied the determination and creativity, God would either facilitate it or he would not. He did. At first, after I soon exhausted my bank of frequent flyer miles, I simply surfed the airline websites for bargain fares. Family and friends soon found out about what I was attempting and began to donate their own miles to me so that I could make the 4000+ mile round trip every other week. The cost of the hospital and physician portion was covered by my health insurance and the drugs were free (provided by the drug company), but the cost of airfare, hotel lodging and attendant expenses began to mount up quickly.
Eventually word spread further in our insular island community about my plight and the lengths to which I was having to go to fight for my survival. Other co-workers and acquaintances, and in some instances even people who did not know me personally, all began to donate miles to me. My Rotary club mounted a campaign soliciting frequent flyer donations that was very successful. At one point a colleague in the bar association wrote an article about me for the local quarterly legal publication and, low and behold, my fellow attorneys began to donate miles. Ultimately I was the beneficiary of over half a million such miles. I was able to participate in the study for two years, always keeping a bag packed and continuing to work full time when I wasn’t coming or going. Of fifty-seven patients in the Sarah Cannon study, five of us had the best response and I was one of those five. My tumors shrunk an average of seventy percent. Chalk up another miracle for Mac.
About one year into the study and knowing that I was having some success, I began to feel a drive from within to give back in some small way for the extravagant blessings of which I was a continuing beneficiary. One day when I was running (always a time when I do my best thinking), I happened upon an idea of how I might do so. My community was in the process of trying to construct our first cancer center. I pitched an idea to my Rotary club about raising money to help fund the center’s completion and they jumped enthusiastically on board, committing the club to matching every penny I raised. My little plot involved expression of my inner Stephen Spielberg.
A friend had once told me that if you want to get people to give you money for a cause, you have to tell them a story. So, I wrote a modest script for a documentary type of a fund raising film with which to pitch my appeal to donors. The next time I was off to Nashville, I took along the family video camera and, with the kind assistance of airline ground personnel, flight attendants, the nurses at Sarah Cannon and in several instances, total strangers, I videoed all the various stages of one of my round trips to Nashville for treatment. To get one scene, I placed the camera on the dashboard and filmed the view leaving the airport, and driving up to the center, (I don’t recommend you try this at home). I searched through my music library, selecting songs for potential inclusion in the musical score. I enlisted Debbie as driver and Elliott as cameraman perched on the tailgate of our car to film scenes of me running past various picturesque locations on the island. One morning after church, the entire congregation was prevailed upon to linger on the steps for a while in order to film a scene of me being cheered on by them as I ran past. Another day my entire Rotary club assembled outside of the hotel where we meet every week for a similar scene. Don’t get me wrong. I know I am a rank amateur, but in the end, I think that status might actually have worked in my favor.
When my modest filmmaking skills had carried us as far as possible, I employed a talented local videographer to film a few remaining scenes where I made my appeal to help us complete the center directly into the lens, and then to edit all the footage into a semi-professional looking nine minute documentary. The theme of the piece was that the Virgin Islands are a fabulous place to live, a fabulous place to raise a family, but not such a fabulous place to get cancer. Cataloging the lengths I had to go to in order to get the best treatment available, and using my running to inspire other cancer survivors to live life to the fullest while fighting it, I appealed for help so that my fellow Virgin Islanders would be able to get state-of-the-art treatment here at home. I used the film to solicit donations from local foundations, corporate beneficiaries of our local industrial development incentive program, my fellow Rotarians and from Rotary clubs around the country. In the end, I was able to raise $100,000 which, when matched by our club’s foundation, helped us achieve our fund raising goal of $200,000.
Today, the well-appointed foyer of the gleaming Charlotte Kimelman Cancer Center which sits adjacent to the Schneider Regional Medical Center is officially known as the Rotary Club of St. Thomas II Lobby. I was invited to sign the last beam installed during construction and later presented with a framed photo of the event, including a shot of the inscribed beam itself. It reads, “For the love of Debbie, Joseph, Elizabeth, Elliott and the rest of my family.”
What eventually ended my participation in the Nashville study after two years and over fifty round-trips was not the exhaustion of my miles, my bank account or my will to live, or even lack of the kindness of friends and strangers. What did it was that eventually, the toxicity of drugs to my remaining kidney began to cause a decline in its function. Since I can never have a kidney transplant because the immune-suppressant drugs required to be taken in the wake of any transplant would be like fertilizer for my cancer, I need to keep that organ in good health. Thus, reluctantly, my odyssey came to an end. My disease remained stable for two years after that and from the experience I gained a whole new realm of friends, one of the best of whom was my wonderful oncologist at Sarah Cannon, Dr. Tony Meluch, an amazing man and athlete with whom I remain in contact. When Tony found out about what I was doing in order to participate in the study, he offered to open his home to me for my biweekly visits. Can you imagine? When my initial good results came in he also encouraged me to agree to the publication of a story for the center’s newsletter about the extent to which I was willing to go in order to participate in the study and about my training for and running marathons (which I did twice while on this therapy). I was told it inspired many other patients to overcome their own obstacles to participate in this and other studies. That was another priceless gift.
As I have matured, my intuitive response to my own good fortune has increasingly taken the form of a desire to give back in some small way. Even as a young man, I always took gifts to the pediatric ward of our local hospital or the Salvation Army on Christmas Eve. I joined Rotary in part to continue that work, to have a vehicle for helping others. But I must admit that until sometime after I realized that I was probably going to live beyond that original death sentence date of eighteen months intoned by the doctor at Sloan, it took only a relatively modest amount of service in order to satisfy my need for it. I sought also to introduce the idea to my children as they grew up, and about six years ago I took Elliott with me to drop off food at the local Salvation Army on Thanksgiving morning. That simple act made our celebration at home all the more meaningful to me. Of course, I also hoped that it would influence Elliott to want to serve others.
At about this time our church took on the responsibility for preparing and serving a lunchtime meal on Tuesdays to around fifty needy folks at the same Salvation Army facility. I decided to give it a try and quickly discovered that although it was hard work in a hellishly hot kitchen, and that the clientele was not always appreciative, I invariably walked away each day with a strong sense of personal satisfaction. I began to sign up for it more and more. Eventually, I told the church staff that unless I advised them I would not be there, they could expect me every week. As I write this, it has been about five years now that I have been serving every Tuesday. Sad to say, and one would hope that our increasing popularity is based at least in part on the quality of the meal we serve, but we now regularly serve a nutritious meal to over 100 needy people that day. There have been times when I’ve been cursed by one or more inebriated individuals, and rarely we have had to summon the police to restore order. At first I was outraged that I should have to be subjected to such abuse (sort of like the old maxim: no good deed goes unpunished), but upon reflection I realized that these men and women are in crisis and hungry. Plus, God didn’t promise me a rose garden when I felt the calling to serve in this way. As the clients have become more familiar with me over time, such incidents have occurred less often. I pride myself on always treating each one of them with dignity, always referring to them as Sir or M’am, and always encouraging them to “enjoy your lunch,” as I hand it to them. I want to believe they appreciate it. Having one person who is consistently there also keeps things running smoothly as other volunteers rotate in and out for a few hours or more of service. Only rarely have I let my illness interfere with this work, as even if I am feeling badly, I know I will feel better when I am done. I’d like to say that Elliott volunteers to serve with me when he is home from school, but I have accepted the fact that it is counterproductive to “make” someone serve others. I am content to be an example for him, and I periodically remind myself that I didn’t discover the joy of helping others until I was way into my thirties; I don’t think it fair to hold him or my other children to a higher standard.
I still serve on Thanksgiving Day. Now however, instead of dropping off something I bought at the grocery store, I am favored with a privileged spot in the chaotic kitchen where, for several hours I exercise my not-too-shabby skills at carving turkeys and hams. It is an honor which is very meaningful to me.
Back on the medical front, I continued to consult with Paul Mathew at M.D. Anderson throughout my participation in the Sarah Cannon study, and when after two years of being off Avastin and Tarceva, the tumor on my remaining kidney began to show signs of growth, I elected to have it removed by laparoscopic excision by Dr. Surena Matin at M.D. Anderson Hospital. Joseph again flew to my side (at my insistence, Debbie remained at home to care for and maintain Elliott’s normal routines) and stayed with me the entire two days I was hospitalized, tending lovingly to my every need. I remember that we decided to put a sign on the door: “Patient is a runner,” because each time a new nurse would come in for the regular every-two-hours registering of vital signs, my low normal resting pulse (forty) would alarm them. The surgery went smoothly, the tumor has never returned and my kidney continues to function at close to normal.
After a year later though, the tumors in my pancreas began to show some progression. By now, Sutent had been F.D.A. approved and I began treatment with it. The side effects of Sutent were unpleasant to say the least. I did not have to endure the foot and hand syndrome that many patients do, but the fatigue I experienced was almost debilitating. I continued to work, but had to close my door usually twice a day and take a thirty minute nap, head down on my desk. By agreement, my secretary would hold my calls and then awaken me at the appointed time. My athletic pursuits ground to a near halt at the depth of the cycles. I could barely climb the stairs in my office building each morning. The sequence familiar to those who have undergone this treatment of four weeks on and then two weeks off was depressing. By the end of the four weeks the changes in my gums and tongue made it difficult to eat and what I was able to consume could only be at room temperature with no seasoning at all. Then during the two weeks off I would gradually begin to improve and by the end be feeling close to normal, just in time to start all over. It is a roller coaster ride for which you would never buy a ticket. But, after six cycles over nine months, the first post treatment scans showed a dramatic reduction in tumor size. Chalk up another miracle for Mac. After this response, I went off Sutent at the encouraging of Paul. I was reluctant to do so, but eventually saw the wisdom of his advice about Sutent that it was not a drug my body could sustain for an unlimited period of time. It had done its work and bought me additional time, and now I could recover my strength and vitality. I expected to eventually have to return to it at some later date.
The next time I returned to Houston for tests and consultations there was another disturbing development. Paul informed me that he had accepted a position as the research assistant to the Dean of the Tufts University Medical School and would be moving to Boston. I was devastated because we had worked together as a team for six years and his sage advice was in my mind primarily responsible for my continued survival. Of course, it’s always all about me. How could this man make life decisions for himself and his family without consulting me? I finally got a grip on myself and wished him well. I so dislike change. No matter that it invariably turns out to be beneficial for me in the long run. I still dislike it and resist it. In the end, Paul shipped off to Boston and I am happy to say that we continue to stay in touch. He recently told me that he had my Christmas newsletter (The Davis Enquirer) on the bulletin board above his desk.
I was given over to Dr. Nizar Tannir, a gregarious man of Lebanese heritage and a gifted medical oncologist. As it turns out, we hit it off immediately and have since become fast friends. He subsequently was named the head of the genitourinary clinic. In response to my complaints about having to wait in Houston for two days before my results were reported to him (and in the past, Paul had been forced many times to resort to interpreting them himself when I came in for my consultation and the official reports were not yet in), he successfully advocated for the expansion of the radiologist staff with the result that an entire new shift of radiologists was added and test results are now reported without fail the following day.
By now my disease had again been stable for some time. Noting this, at one of his early consultations with me Nizar raised the idea of having a pancreatectomy. This removal of the entire pancreas would he said likely be curative for me, as the only “spot” outside of my pancreas was a suspected nodule in one of my lungs that had never changed size since its initial discovery early on in my medical saga. He told me that as a relatively young man, he would expect me to do well after the surgery. We discussed how the technology of insulin pumps had advanced in recent years and that he had two patients, one an older man and one a young mother of two, who had elected to have the surgery. He promised to put them in touch with me. I did some research on being a brittle diabetic and concluded that my quality of life would diminish substantially, that my athletic life would likely have to come to an end, and that there could be no guarantee that the cancer would not come back somewhere else. That I never did hear from either of those two patients put the final nail in the coffin of that idea. I did inquire about them to his physician’s assistant later on and was told that the young mother was having trouble balancing her diabetes. Still, I appreciated that Nizar had raised it as a plausible option as I have an affinity for advisors who think out of the box.
In March of 2010, (just four months ago as I write this), I had the worst scan report of my entire odyssey. The radiologist reported that there were now suspicious enlarging nodules in my lung, eleven progressing pancreatic metastases, multiple progressing peripancreatic lymph nodes and multiple enhancing lesions in my liver. Though not entirely unexpected, it was fairly devastating for me emotionally. I had at some point allowed myself to believe and had begun to live my life as if I was going to beat this thing altogether. Now, I reckoned that my astonishing run of good luck was finally over. Several different doctors had given me a similar theory about why I continued to survive and thrive beyond all odds. It was two-fold. First, my tumors were medically classified from the start as indolent, (my view is that, in a saving twist of fate, my tumors took on the characteristics of two of my principal character defects) or lazy and slow growing. Second, for reasons still not understood, my own immune system had mounted a rigorous and effective defense to the progression of the disease. These new test results seemed to indicate, at least to me, that the figurative dam of my immune system had finally been breached, that rapid growth and spread had overcome my natural defenses and would now likely proceed explosively. Of course I thought that I was keeping these thoughts to myself, but in truth, everyone close to me sensed that I was a man in acute distress.
In another medical miracle for Mac, Votrient had been F.D.A. approved just three months previously. Nizar explained that its side effects were less toxic than Sutent’s as witnessed by the fact that there was no need to go off Votrient after four weeks to allow the patient to recover before continuing. I began a course of Votrient, which therapy I have been on now for over four months. At first the side effects were fairly intense. I had difficulty with nausea and weakness. My gym workouts reflected this although my buddies would brook no suggestion that I take time off. Neither would my cycling buddies, and they would eventually be responsible for a turning point in my physical and spiritual response to the treatments.
About a month on Votrient and an accompanying spiraling decline in my athletic performance, I became increasingly discouraged. One fellow in my cycling group (Wally) began talking about organizing a fifty mile bike rally. A rally is more like a tour than a race. Any fifty mile course on St. Thomas is going to include a lot of mountain climbing. Since I knew there was no way I could participate, I simply ignored the talk. Eventually, the rally got a name: the Nifty50 and commercial sponsors who would partially underwrite the cost, including special jerseys. Still, no amount of encouragement could convince me to consider signing up for it. If I thought about it at all, it was with the intention to situate myself somewhere along the course on rally day and cheer on my friends as they whizzed past. When Wally emailed me to tell me that the group had decided to add a ten-mile circuit (all flat) at the beginning of the rally, my resolve weakened momentarily and I agreed to try at least that initial portion. Not long after, Debbie came home one day and told me she had run into Wally. She said he had told her about the rally and that she had ended up paying for a jersey for me ($60). I recall thinking that odd as she worries about me cycling, especially since I’ve had three accidents since I began. In the end, I just figured she was trying to lift my spirits and for that I loved her even more.
Two days before the event, the special jerseys were distributed. When I was handed mine, I thought it was cool that “Mac” was printed on the sleeve. Not until the morning of the rally at the starting line did I learn (when one of the guys finally had to point it out to a still clueless me) that though mine had “Mac” on the sleeve, everyone else’s jersey sleeve read, “I ride with Mac.” If you’ve read this much of my story, you probably won’t be surprised to read that, as we would say in our local West Indian dialect, “I buss out,” in leaking eyes that is. Of course, I came in dead last at the end of the ten-mile circuit, but as I told them all in a broadcast email later that day, in my mind, I came in first. Most people go a lifetime without ever having something like this happen to them. This incredible gesture, all the more meaningful because it came from a bunch of tough guys not given to this sort of expression of support, turned out to signal a spiritual and emotional epiphany for me. As a direct result of what they did, I began to claw and scratch my way back to my pre-Votrient fitness level, and I have since assimilated to the side effects to the point where, on most days I now consider them to be merely nagging. I’ve learned never to underestimate the resilience of the human spirit, or the imperative of good people to want to help others.
Naturally, when I returned for scans last month, I was exceedingly anxious for the results. If Votrient did not work for me, the alternatives, although I was fortunate that there were alternatives , were not as encouraging. The day after my tests, when I arrived for my consultation I would venture that I was more fearful about receiving results than I had ever before been. I had been quietly trying to prepare for the worst for weeks.
M.D. Anderson has a specific protocol for these things. You are called in for your vitals to be taken. Then you go back to the waiting room, soon to be called by a different nurse who puts you in an examining room. Then the physician’s assistant comes in, surveys your current condition and then goes over any test results. Finally, the doctor comes in to examine you and discuss whatever the topics of the day are. Thus, when I had barely been ushered into the examining room before the door opened and Nizar himself suddenly filled the entrance, a momentary cold chill ran down my spine. I gulped and must have blanched because he promptly broke into a broad grin and said “Mac, your response to Votrient has been dramatic! Your tumors are either considerably diminished in size or no longer visible on CT scan!” He opened wide his broad arms. Suddenly I was standing and he virtually swept me up in a bear hug. I had been prepared for anything but this. So relieved was I and so overwhelmed by his enthusiasm and good humor, I didn’t even ask to go over the results. After he examined me and we agreed I should continue on the drug, I stumbled out of the office still in somewhat of a delirious fog. I found the nearest armchair in a remote corner of the commodious M.D. Anderson waiting area and gave vent to my emotions. Finally, after a time I called my wife and then my kids to share the news. It wasn’t until several days after I returned home, a part of me still wondering if I imagined the whole thing that I summoned up the courage to email a request for the written results. When I received them, I was amazed that there was simply nothing not wonderful about them. Chalk up another medical miracle for Mac.
So here I sit, thirteen years after the initial diagnosis, and eight plus years after I was told I was likely to survive perhaps eighteen months. I work out in the gym five days a week with a group of men who are inspirational in body and spirit (don’t ask me why they allow me to work out with them), I ride my road bike three days a week on a sixteen-mile course that includes several fifteen degree ascents. I work a regular forty or more hour week managing a staff of six attorneys and four support staffers, continue to volunteer at the local Salvation Army every Tuesday and occasionally cook at our homeless shelter on Saturday mornings. I am an active member of a seven person Magens Bay Authority that manages two of our island’s most beloved beaches and wildlife parks (and enjoys a peerless and well-deserved reputation in the community). I try in many other ways to be a humble (hey, I said I try) contributor to my island community.
When I walked out of that Sloan-Kettering medical building in New York City eight years ago, I thought I’d be dead before little more than a full cycle of the seasons. I asked God to let me survive just until Elliott, then eleven, graduated from high school for I believed then and now that my children are my life’s work and that this youngest of them needed me at least until then. I despaired that this prayer would be answered. Yet, in a special courtesy accorded me as a past chairman of the private school’s board of trustees, I handed this child of my heart his diploma over a year ago as I had his brother and sister when they each graduated. Last fall Debbie and I accompanied him to Boston to enroll him in Tufts University (her alma mater). I am very proud to report that he went on to achieve the Dean’s List as a freshman. A little over a month ago, I walked my beloved daughter down the aisle at her wedding here in St. Thomas to Dr. Stanley Voigt. She received her degree in veterinary medicine last spring from the University of Pennsylvania. She is now interning at the New England Animal Medical Center. This is the same daughter who ran four New York City marathons with and in support of me (the last one she and I used to raise over $7000 for the Kidney Cancer Association). In a toast to her at her wedding, I said that since the day of her birth she has been like a warm ray of sunshine on my soul. Stanley is now an interning physician at Tufts University Medical Center (another deliciously ironic twist). Their future together is limitless.
My darling wife has by turns loved me, nursed me, encouraged me, when I despaired held me and told me it was all going to be alright, handled every single aspect of medical insurance coverage of my illness and its treatment for thirteen years running, and so, so much more. She and I might have been a bit anxious about our becoming empty nesters last fall. After all, we had focused our entire lives on raising our children for the past twenty-nine years. But, we quickly discovered that we naturally fell right back into the pretty damn great way it was for the first five years of our marriage before children. We just celebrated our thirty-third wedding anniversary. She believes I am going to live twenty or thirty more years. I am dubious about that, but it sure is nice to have someone around who thinks that way. I still try to take life one day at a time, try not to project, and try to focus only on the next right thing to do. I also try to make the absolute most out of every single day. I try to maintain a conscious awareness that there are no do-overs in this life so one best make the most of each precious day. As Bonnie Raitt, one of my favorite songwriters sings, “Life gets more precious when there’s less of it to waste.” I also try in my own small way to give back in some measure a portion of that with which I have been so lavishly blessed. I am surely not the man that God knows I am capable of becoming. But, in continuing to seek Him, I intend to keep working toward that goal for as many more days on this earth as I may be given.
I wrote this epistle (as my Grandmother would have called it) because Leigh Reese (talk about an inspirational figure) has been relentless in her pursuit of it for her kidney cancer warrior’s website. I jest, as that is not really true. The real reason I wrote it is that I hope it will provide encouragement or perhaps even a bit of inspiration to someone battling kidney cancer, or someone who loves someone who is battling kidney cancer. It is surely not because I think I am inspirational. I am not. I have done everything I have done because I have a richly blessed life, the chief blessing being an awareness of that richness. I want to stay here on this earth to continue on my path and to be a part of the lives of those who I love so dearly. That I get so much more than I can ever give back is just the way it is when one tries to live life to the fullest on life’s terms. I hope my intention in penning this saga is fulfilled. It will be if just one person benefits from it. Thank you for reading it, and remember always to press on regardless.
Mac Davis
St. Thomas, Virgin Islands
I must admit that I have continuously been on Mac for sharing his story long before I created this Resource Blog. When Allen (my husband) was diagnosed with kidney cancer and found the KCA Forum web-site, it was "pressonregardless" and his posts that caught our attention. And it is at least in part, because of Mac, that Allen and I have such a huge support system among the kidney cancer community - in the KCA Forums, on facebook, and in the Kidney Cancer Warrior Support Group (facebook, blog, and chat). I personally want to thank Mac for his post on the KCA forums, for his willingness to always be so authentic. I could say so much more about this man but I will say this one last thing ~ he humbly says that he is not an inspiration! I know for a fact that he truly is an inspiration ~ he's an inspiration to me, to my husband Allen, and to so many others. I hope you are as blessed by his story and by this man as I have been over the years. Mac, I am truly blessed and honored to call you friend! Thank you for your friendship! ~ Leigh
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