Presentation to RI Cancer Council Workshop - March 27, 2003
Colon Cancer: Time to Learn and Live

By Craig W. Carpenter

As I sat down at my computer yesterday to think about what I might say this evening, it occurred to me that this is only the second time that I have spoken publicly on my personal experience with colon cancer. In my preparation I was also struck by the profoundness of the title for this workshop: “Colon Cancer: Time to Learn and Live”. How appropriate these words are for all of us in this room. Whether you are a colorectal cancer patient, a colorectal cancer survivor or simply someone who is here seeking information about the second most common cause of cancer death in the United States, the time to learn about colorectal cancer and live is NOW. To pique your interest immediately, let me ask you a question. Do you know that for 2/3rds of the approximately 56,000 Americans who will die this year from colorectal cancer that their deaths were preventable with simple screening and prevention methods? No matter how you respond to this question, the time has come for you to learn about colon cancer and live.

For me, my time of learning and living began on New Year's Eve 2001. On that afternoon, my gastroenterologist stepped into the recovery area of outpatient surgery at Kent Hospital and with great anguish on his face shared with my wife and I news that neither of us was expecting. Dr. Trupiano said, "This is the hardest part of my job". He told us he was unable to complete the colonoscopy because he encountered a circumfrential tumor in the sigmoid portion of my colon which had practically closed down my colon and which he was 99% sure was cancerous. One look at the picture he had from the procedure and I myself didn't need further confirmation. I'd seen enough diseased tissue in my twenty-year career as a funeral director/embalmer to know what I was looking at. Dr. Trupiano indicated that immediate surgery would be necessary, but because the next day was a holiday I was discharged and we went home in total shock. Needless to say, our lives have not been the same since. Never in my wildest imagination had I envisioned fighting this type of disease.

As word spread of the news amongst our family and friends, several began an online search for information and before too long we knew so much more about colon cancer and what possibly lay ahead. Our surgeon, Dr. Brady, called the next morning, Tuesday New Years Day, to schedule an immediate sigmoid colon resection. So right there, over the phone while he was in the operating room suite at Kent Hospital, he set up a surgical consultation in his office for Thursday and told us that surgery had been scheduled for Friday morning, January 4, 2002.

For me, the reality of the whole situation didn't hit until the next day, Wednesday, when we went to the hospital for pre-admission testing. As a funeral director, I have made funeral arrangements with many families whose loved ones had died from cancer and over the years had completed and signed many death certificates reporting the death due to some form of cancer. The harsh reality that day was that now it was MY name next to the pre-admission diagnosis: COLON CA. I was devastated. Despite all the tears and fears of those first few days, I broke down crying under the stress of my new reality. I had cancer.

Let me take you back in time for a few minutes so you can better understand how we got to a cancer diagnosis. As to my medical history, except for having my tonsils out, I had never been in the hospital. There was no history of colon cancer in my family (although I now understand that 85% of all individuals diagnosed with colon cancer have no family history). I didn't smoke, I rarely had an alcoholic drink and I was overall quite healthy. In fact, after the surgery, my surgeon said to my wife that outside of the cancer in my colon, it had been a long time since he had seen such healthy insides.

In late October of 2001, I went to see my doctor, Dr. Richard DelSesto, because I was experiencing lower right abdominal pain. He sent me to a surgeon, who would later operate on me, who examined me for a possible hernia. No hernia was found. My physician saw me about ten days later for my annual physical during which a rectal exam showed the possibility of blood in my stool. Having that sample test positive for blood, my physician ordered me to do a fecal occult blood test. As a result of these tests also indicating a positive presence for blood, he ordered two more tests in an effort to isolate the source of the bleeding. An abdominal CT with contrast was scheduled as well as a colonoscopy. The CT scan showed nothing abnormal and you've already heard the results of the colonoscopy.

Before I move along the timeline let me say a few words about all of the screening procedures that I have been through because I think a lot of the fears lie in the screening procedures themselves. I have learned that many of my fears concerning all these tests became unfounded. The worst part of the tests truly was drinking the bowel preparation for the colonoscopy, and that took me a total of about 2 minutes. I've since learned, especially after doing a different prep for surgery three days later, that there are choices of preparation and in my mind the simplest is the fleet phosphate soda. Otherwise, accept for my normal apprehensions of hospitals, needles and these types of tests in general, I was actually surprised by how comfortable I was throughout all of my tests. In talking with friends and family I have found most people avoid having a colonoscopy because they think it will be an awful procedure. However, once you've experienced it, and I've had three in the last twelve months, you realize that you sleep through the procedure and everyone in hindsight agrees that the worst part was drinking the bowel prep. I encourage you to talk with your physician about your options for preparation for this procedure.

Back to the timeline. Surgery went well with good clean margins being left after the tumor was resected. We then, because it was a weekend, waited four days for the pathology report. On that fateful morning, which actually was one day sooner than anticipated, my surgeon, Dr. Joseph Brady, sat down with me, and called my wife at home, to very compassionately explain the pathology report. He stated that it showed a stage III tumor (there are only four stages) which was invasive of the wall of the colon and that there were two out of ten nodes testing positively. He talked with me at great length about what all this meant. After making and discussing his recommendations concerning an oncologist he encouraged me to choose one quickly and indicated that in his opinion he was sure that any chemotherapy treatment planned would begin as soon as I was postoperatively ready. He suggested that while I waited for treatment to begin that I build my strength up through good nutrition and exercise. This conditioning, he stated, would be important not only to aid my recovery from surgery but would also help to prepare my body for the affects of chemotherapy. Dr. Brady also indicated that during this time frame would be another colonoscopy, approximately five weeks postoperative, in order that the entire colon could be seen prior to the start of chemotherapy. If the entire colon was healthy then chemo would most likely begin in another week or two. During his final thoughts that morning, he expressed his concern that colon cancer in a young person demanded an aggressive response and treatment protocol.

We made our choice of oncologist and we were able to schedule an appointment for January 18th with Dr. Joseph. Dr. Joseph expressed the opinion as well that we needed to move right ahead with treatment as soon as my treatment protocol was agreed upon and I was postoperatively ready. During the next week or so we had the privilege of meeting with Dr. Paul Calabrese, one of this Council's members, who spent a great deal of time talking with us about all we had been through and all that he felt we would be facing in the near future. Dr. Calabrese spent several hours talking with us and was extremely helpful in making technical information more understandable for us and was also very explicit in his description of the type of tumor that I had because mine was not polyp based. Dr. Calabrese mentioned that a circumfrential tumor such as I had probably had been developing for 7-8 years within the wall of my colon. He explained that eventually as the cells continued to multiply, the tumor would double in size each time the number of cells grew and that this event probably took place 3 months or so prior to the tumor nearly closing down my colon in late December. He also asked our permission to offer his opinion on my treatment protocol to Dr. Joseph, which we provided, and to continue to monitor my case as I went along. We remain very grateful to Dr. Calabrese for his interest in me.

During the days after surgery, we were given many different booklets to read. One of the most helpful bits of information we read in all of the different cancer society publications was to select an individual to go with us to our doctor appointments. This individual was selected to serve in one capacity, as an information resource. The suggestion made was to find someone who could be another set of ears, someone that is not going to be as emotional as you will be reacting to what you hear during those appointments. This person can remind you of questions on your list that you forget to ask and ask those questions that you should be asking based on what you've heard. We chose a close friend who has had two immediate family members die from cancer and I can't explain to you how valuable her presence has been. To this day, Marie still goes with us to our doctor appointments.

On February 5th, the next colonoscopy was performed and the entire colon looked very healthy. One week later, on February 12th less than six weeks postoperative, we began many months of chemotherapy. The treatment protocol called for four cycles of one two-hour IV infusion of 5FU/leukovorin each week for six weeks followed by two weeks off. This continued for three cycles at which time early in the month of August based on Dr. Calabrese's recommendation, nine treatments of another drug, CPT11, were scheduled. Unfortunately, during the third treatment, I had what was believed to be an allergic reaction to the drug and any further infusions were cancelled. The final six-week cycle of 5FU began after a one-week break and was completed on October 2, just three days before my 42nd birthday. What a great birthday present!

In preparation for treatment, the doctor and nurses discussed with us all the possible side effects. You talk about information overload. Regardless, I had to be prepared for what may, and I stress MAY, be the side effects of the treatments. Fortunately for me, those that did occur were not severe and only lasted for a few days after treatment. Fatigue was always an issue especially trying to work while undergoing chemotherapy. After chemo ended, follow-up tests were ordered. Two CT Scans were performed in late October and early November, the second being one of multiphase contrast. Each scan showed a small spot on my liver that was too small to characterize but which was believed to be a cyst. Based on this inconclusive information regarding that spot, the decision was made to have another multi-contrast scan in 90 days. After the holidays, another colonoscopy was performed, the results of which showed a healthy colon.

It truly had been a very long year. My wife and our two children, ages eight and eleven, were real troopers as we came to grips as a family living on a day to day basis. We looked at each day as either a good day or a bad day. Nothing more, or less, because tomorrow may be different. We tried to live life as normally as possible especially for the children's best interest.

I can't say enough about the wonderful care we received from our doctors. The compassion expressed and quality of care given often made us feel like the most important thing on our doctor's mind at that moment. The nurses in the hospital and in the chemotherapy suite became a tremendous source of strength for us. I never realized the number of people I know who themselves are cancer survivors, or cancer patients, until I began this journey. From the very beginning we were surrounded by individuals who continuously comforted us like angels sent from heaven. I have even received notes from families I served at the time of the death of a loved one who told me that now it was their turn to care for me in my time of need.

I am very grateful for the aggressive stance our primary care physician, Dr. Richard DelSesto, took regarding the testing to be done in order to locate the source of the pain I was a experiencing. I am also very grateful for the honesty with which each doctor has continued to answer our many, many questions. I am especially grateful for those cancer patients and survivors who have modeled for us the mental toughness necessary to beat this disease.

It has been an experience that compares to none other in my life. I have never had to fight so hard for anything. Despite the darkness that has loomed over our lives these past fifteen months, the numerous blessings we have received have enabled us to march forward believing we would win the battle before us.

One of my favorite radio personalities is Paul Harvey and for those of you who are familiar with his style of broadcast journalism, may I say to you, "and now, the rest of the story."

As I stand here before you this evening, I am literally receiving chemotherapy as I speak. You see, that small spot which appeared in both CT Scans late last year, when scanned again on January 21of this year had grown seven times in size and now there were three spots. The result of which was a new diagnosis on January 27th of METASTATIC colon cancer. In English, and much to our dismay and disbelief, this meant that the cancer had spread to my liver. What appeared was one rapidly growing lesion and two uncharacterized small spots. On February 3 we received significant news that the chest CT the previous day showed that my heart and lungs were clear and therefore we were faced only with isolated metastasis to the liver. After many days of further testing, doctors' appointments and some serious decision-making, I was operated on on February 18 for a hepatic resection during which 15 % of my liver was removed and a hepatic infusion pump was implanted in my abdomen at Memorial Sloan Kettering Cancer Center in Manhattan. The surgery itself was very successful and I am now five weeks postoperative. The protocol for chemotherapy began last week and will continue until October. Three types of chemotherapy will be administered during that time; one of direct infusion into the liver which is what I am receiving right now. Beginning next Wednesday, the other two will be administered by means of systemic infusion.

Please take a good look at me. You probably would agree with the many others who have often said during the past fifteen months, and still are saying, "I can't believe he's sick, he looks so good". I urge you to understand that looks can be deceiving. Colon cancer is sometimes referred to as a hidden cancer. Know that it can be prevented, and it is only with the proper screening and testing that you can avoid what I've been through and am now facing.

I'm not sure what, if anything, I could have done differently to change my situation. Unfortunately the standard baseline age for colonoscopy screening is 50 years old. I am hoping that doctors and insurance companies will work together to lower that age to at least 40. THAT would have made a difference in my situation. I hadn't had pain for that long, nor were the other classic symptoms present over an extended period of time. But thank God I pursued what pain I had, because at least I'm still alive and have given myself a fighting chance. I try not to ask myself why this has happened because I know that no answer to that question would change a thing. I did however, the first time I had the urge to ask that question, make a conscious decision to fight and fight hard. I knew then, and still believe now that I have a lot to live for. A significant force in my fight is my belief in God and the power of prayer.

For me a "time to learn and live" is a daily event. The opportunity to speak to you this evening has been a wonderful experience for me in living despite all that I am facing. My wife and I are firm believers in the fact that there is great power in knowledge and we can attest to having benefited greatly by advocating for ourselves using all we have read and learned concerning this disease.

For you, I hope and pray that you don't wait until a time of crisis. The time to learn and live is now! I hope that you leave here tonight with the knowledge that you can most likely avoid what I've been through with proper medical screening and detection. If you don't have a primary care physician already, I offer you a challenge to make it a priority TOMORROW to find one. Don't wait any longer to establish a relationship with a primary care physician who on an ongoing basis will be familiar with your medical history.

In closing, let me offer you one final thought that has had a defining impact upon my life. My father's has always expressed a firm belief that every individual member of his family would see a doctor on a regular basis. Accepting that philosophy as my own, and adhering to it, has given me an opportunity for life. I hope you'll make that same choice. Please learn from my experience and live.

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