#h#As of December, 2007#/h#
I am a stage IV colon cancer survivor — so far. After having been diagnosed with colon cancer four years ago and having undergone three major surgical procedures and almost two years of various chemotherapy treatments, I am now considered stable. Some people are starting to call me “miracle man.” My doctors are telling me that I should start to consider my cancer as a chronic disease — to be treated and lived with, but not cured. Along the way I have had a number of experiences and learned a number of lessons that I feel might be useful to others who are faced with cancer or other life threatening diseases.
I have had to rethink my life and am probably a better person now than I was four years ago. And I have had the support of a lot of people: my wife, my family, a lot of friends, and some very good doctors. Hopefully my experiences can give others hope for the future. And that is why I have decided to write this journal about my cancer journey.
If you want to make the quick visit through this story, just read over the timeline at page 12 and then jump at any time to the lessons learned starting on page 52. If you want to get the whole story, including my reactions along the way and a little past history on some events in my life that may have helped me in my ability to cope with this disease, then you can read on in full.
#h#‘At Least You Won’t Need A Bag’#/h#
It all started on the Tuesday before Thanksgiving, four years ago. It was on a day when I had volunteered to help out at the Trenton Soup Kitchen with other members of the Princeton United Methodist Church. I was feeling good about myself as I went to an appointment with a surgeon, Dr. Tom Davidson, to check out some rectal bleeding problems that I was having.
I didn’t expect to find anything too serious since I had been in general good health, beside the somewhat usual high blood pressure and high cholesterol stuff, and had had a normal colonoscopy from Dr. Davidson three years prior. I had been to see my GP, who found nothing that would cause my symptoms and said that if they persisted I should go to see Dr. Davidson. So here I was. I thought at worst he would find a hemorrhoid or something like that. He had fit me in with the last appointment of the day.
At first he checked me out and didn’t seem to find anything serious. Then he said “Look, you’re here and I’m here and I’ve got some time, so let’s do a more comprehensive test.” He gave me a fleet enema, sent me to the bathroom to get ready, and when I came back he performed a sigmoidoscopy, a test that looks at the lower third of the colon.
Much to my surprise, he said that he found something that he did not like and he was going to take a biopsy. I asked what that meant, and he said that there was a possibility of cancer, but he knew that I had had a clean colonoscopy just three years prior and that cancer polyps were not supposed to form that quickly. However, he said that he was going to send the sample out and that with Thanksgiving coming up we would not get the results back until Friday.
My wife, Pat, and I know him personally (we both had kids who had gone to Colgate at the same time) and he said that he would call us at home Friday evening. As I was leaving his office, his nurse said “Well, at least you won’t need a bag,” referring to the bag that many people end up with after having had rectal surgery.
At the time, I thought it was a cruel joke, but I realize now that she was trying to make a tense situation more positive. They had indicated that the growth they found was far enough up the colon that a straightforward colon resection was possible, and a more comprehensive colon-rectal job would not be required, and she was trying to make me feel good about a possible bad situation.
That night, when I told Pat about the doctor visit, she was surprised. She had been unaware of my symptoms and also unaware that I had the appointment that day. But, for us, that was the start of a process in which she would be involved almost every day of my life for the next four years. And we were both very apprehensive about our future.
#h#The Bad News#/h#
Thanksgiving that year was at the home of my brother, Jim, in center city Philadelphia. Thanksgiving has always been a big holiday in the Cooke family, starting from my early days growing up in Bowling Green, Ohio, the son of a college professor with four brothers and a sister.
Now, my brother’s family and mine normally alternate Thanksgiving between my home in New Jersey and his. This year my wife and I were there along with my son, Scott and his wife Cristina. My daughter, Kelly, was living in London at the time. We had been having a very nice time and then, at the end of the evening, I shared with them the news that I was expecting the results of a test the next day, and that we would keep them advised. A pleasant day ended up on a somber note.
Friday was a very long day. Pat and I were anxiously awaiting the phone call from Dr. Davidson. And that evening the call came; it was not the news that we wanted to hear. I did indeed have colon cancer. We were devastated to say the least. While he does not normally have office hours on the weekend, Dr. Davidson said that he would like to see us in his office the following morning. That Saturday morning, Pat and I had a long discussion about colon cancer, the first of many discussions we would have with doctors over the next four years.
Dr. Davidson wanted to schedule some more tests to determine the extent of my disease, including a colonoscopy and a series of CT scans, and also to discuss the surgery that he was recommending; a colon resection to take out about 18 centimeters of the colon, including the diseased section. We left that session downhearted, not knowing just how to proceed with our lives. Pat may not have known it yet, but she was already settling in to the role of Caregiver. (See Lesson 1.)
That Sunday we had the first of many discussions with one of the ministers at our church. At that time we were not prepared to talk openly to many people about my condition but wanted him to know what was going on. It felt comforting to have a minister aware of my situation. At this time we were almost afraid to talk to anyone else.
The next week the dates for the surgery and the follow-up tests were scheduled. When they attempted to do the colonoscopy, they could not safely get by the area with the tumor so they reverted to a barium enema as a fall-back; probably the worst test that I endured over this whole process because of the discomfort involved. Although many people do not like the colonoscopy, I heartily recommend it over the barium enema. And I had my CT scans and pre-admission testing.
My wife and I were leading pretty busy lives at that point in time. We were realtors for the Coldwell Banker office in Princeton where my wife was one of the top agents, and we had two closings and a number of other real estate-related activities planned for the next two weeks. I also sing in the Methodist Church choir and with a mixed chorale group in the area, Voices Chorale, and had a full agenda of Christmas concerts coming up. So we started to plan how we would get through the time until I completed my surgery and recovery. At that time, I didn’t expect to be out long. And we awaited the test results from the additional tests that I had had performed.
The first of the Voices Chorale concerts was coming up the next weekend and I decided to sing in it. It was an outreach concert in the community hall in Yardley, Pennsylvania. At the time, I was the bass section leader, responsible for the care and feeding of the baritone/bass section. I had a short discussion with another one of the basses, Al Chan, regarding my condition and asked him if he would mind temporarily taking over my duties until I returned.
At that time I expected to be out of commission with the surgery for two or three months at most. I also told him that due to the schedule of my surgery, I would not be able to sing the next three concerts that were on the docket for December. I enjoyed being able to sing in the Yardley concert, not knowing that I would not only miss the remaining December concerts, but many others over the next few years. And little did Al know that he was agreeing to be bass section leader not just for the next few months, but in actuality for the next four or more years.
The next weekend, my wife and I went to a holiday party where I ran into a cancer specialist at the Cancer Institute of New Jersey in New Brunswick. I briefly discussed my situation with him and he said that if the cancer was contained in the colon it was a straightforward operation and follow-up, and that the chances of survival were good. If it had advanced beyond that stage, then it could be a long haul and survival was more uncertain. My surgery was scheduled for the next week.
#h#More Bad News#/h#
The Monday before the surgery, Dr. Davidson called to say that the results of the CT scans were not good. They showed three spots on my liver, two small ones on the right side and a larger one on the left. This meant that the cancer had moved from the colon, through the colon wall, into the blood stream and metastasized in the liver.
This is called Stage IV cancer and is about as bad as it gets. Dr. Davidson said that while he had done liver resections for cancer over his 35-plus years of surgery, he did not specialize in hepatatic surgery, and we might want to look for a liver specialist if my situation resulted in having cancer surgery on the liver. We also needed to consider whether we should schedule both colon and liver surgeries at the same time.
This raised a lot of questions. What were we to do now? Colon surgery as scheduled later in the week or something else? We were neophytes to this situation. We were dealing with a lot of new terms, did not have a plan, and were quite confused. That evening I contacted the cancer doctor whom I had met the prior weekend and asked if he had any advice. He said that he would try to line me up with a liver cancer surgeon at his center, and would send out an E-mail that night.
On Tuesday we were advised that we could see the liver specialist in New Brunswick the next morning, which was the day before my scheduled colon surgery on Thursday. This was indeed a positive break, because normally they scheduled new patients weeks ahead. I called Dr. Davidson’s office to tell him about this appointment, particularly because I was supposed to start the bowel prep for my surgery on Wednesday morning. They told me that if I started the prep at noon, it would be OK. So Wednesday morning Pat and I went off (with my scan films under my arm) to see this new liver cancer specialist.
To net out that appointment, the liver specialist recommended that I take a step-by-step approach. He said that having surgery on three tumors on both sides of the liver at the same time was more difficult with more risk involved than with fewer tumors, and that the new chemotherapy treatments just coming available might be able to shrink or eliminate one or more of the spots.
He would recommend having the colon surgery first to get that done, have chemo to attack the liver spots and keep the liver surgery open as a future option. We thought that was a good, solid approach, and left his office knowing that, at least, we had a plan for the immediate future. We called my surgeon’s office and told them that we were good to go for surgery the next day, and I went home to start the bowel prep procedure. (See Lesson 3.)
#h#The First Surgery#/h#
I believe that you have anxious moments anytime one has a major surgery. I had two previous major operations at the Medical Center at Princeton where the colon surgery was being done; one in 1977 on a tumor in my left parotid gland that turned out to be benign, which resulted in the whole left side of my face being cut open, and the second in 1983 for a ruptured appendix, which was originally misdiagnosed as a heart attack (but that is a whole different story). So I was familiar with the hospital.
The anesthesiologist was a member of our church, and it was comforting to see her in the surgical suite. And although, I am told, the surgery went on for a while, it was successful. My wife, Pat, my daughter, Kelly, who had flown home from London, and my son, Scott, who lives about an hour away with his wife in Westfield, but works locally at Bristol-Myers Squibb, were all there when I recovered. Dr. Davidson had taken out 18 centimeters of the lower colon and appeared to get all of the local cancer. My immediate recovery went fine. I was tired but feeling pretty good.
A couple of days later, my body had a reaction. My heart rate jumped and they could not seem to get it back to normal. I was moved from the oncology floor to the telemetry unit where they have the ability to continuously monitor your vital signs. They could not find a normal room for me so I was put in a space at the end of the hall in front of a private room near the red light for an exit door.
Then began two of the most difficult days of all of my hospital stays. I was a mess. The high heart rate caused anxiety and I could not get comfortable at all. Being on the telemetry floor, I had a monitor pack on my chest to go along with my pulsating boots, oxygen feed, IV drip, catheter, etc. And to top it off, they would come in to check my vital signs every few hours, so you could not get any sleep if you wanted to. They sent me down to the radiology floor for a number of new scans and tests to see if anything from the surgery had caused the elevated heart rate and didn’t find anything. And they tried a number of procedures throughout the night, all of which failed to alleviate the problem.
That night I remember looking up at the red exit sign on the door the whole time. Since they had to go through my temporary space to get to the patient in the next area, his wife and the nurses kept going by my bed all night.
I was miserable. I remember the next morning calling Pat at about 7:30 and telling her that she had to get me out of there. I told the nurse that I was leaving. She was a bright spot in the whole thing. First, she told me that if I left without being formally discharged, my insurance would not cover the bills, so she did not recommend doing that. But most of all, she told me that the person in the space behind me was being moved out and that I would be moved into that space later in the day. Hurrah. My wife later told me that getting that “crisis” call was one of the toughest things that she had to deal with during this whole process.
After being moved to the new room, things started to look up. An interventional cardiologist, Dr. James Beattie, came to see me and told me that, if I agreed, there was a procedure that he could try that might bring my heart rate down. After he left the friendly nurse told me that she had worked with patients who had had the procedure, that she would be with the doctor the whole time, and that I would be OK. The procedure went well, my pulse rate came down to about 64 and it has remained there ever since. I had been stretched to the limit, but was beginning to have some hope.
#h#Stretched to the Limit#/h#
There are times in your life when you feel that you are stretched to the limit. I am sure that there are many jobs where this happens regularly, such as firemen, police, first responders, or top gun pilots, but most of us probably don’t have that many times when it happens to us — when your adrenalin gets really pumped up and you really feel stressed out. Looking back on my total cancer experience, this two-day hospital stay in the telemetry ward was one such experience.
I was trying to think back to other experiences that might have helped me prepare for such an event. Nothing popped up from my early days in Bowling Green, my high school days, or even University of Michigan (Class of 1955). All of this seemed to be the normal stuff of growing up. But later in life some stressful situations started to pop out, some of which were of my own making and are worth commenting on.
In 1956 when I was a supply officer in the U.S. Navy and, after the first payday at sea, I tried to balance my cash. I was $10,000 short.
I was mortified, picturing court martial, and all of the other things that they had told us at Supply Corps School happened to dishonest supply officers. Then I looked up and saw the money bag that I kept stored out of the way on an upper shelf in the supply office. It was in an unsecured location and anyone who worked in the supply office or walked by could have had access to it. I quickly jumped up from my chair, and pulled down the money bag, and lo and behold, there was a package of twenty dollar bills totaling $10,000.
I was exalted to say the least, and my Navy career was saved. I don’t remember then or now how I ever left the money in the bag at the time, but I remember the flow of adrenalin that came with that experience. I never told anyone in the Navy about this event and went on to complete a successful three-year career.
Then in November of 1972, Pat and I were performing in an Agatha Christie play, “The Mousetrap,” in a dinner theater production at a church in Pittsburgh. We had the parts of Giles and Molly Ralston, the owners of the Monkswell Manor Guest House in England. It is an excellent play and one of the longest running plays in London. We had held the early rehearsals for the play in our basement since our daughter was coming up on a year old and we would not have to get a baby sitter.
Pat and I had met in January, 1967, at the ski resort in Boyne Mountain, Michigan, and were married at the Shrine of the Little Flower in Royal Oak, Michigan in June, 1968. Pat had been a drama major in college and was teaching drama in Detroit at the time of our marriage, and I had done a lot of musicals in Jackson, Michigan before our marriage, with the roles of El Gallo in the Fantasticks, the Pirate King in Gilbert & Sullivan’s, “The Pirates of Penzance,” and Pooh-Bah in the “Mikado” being three of my favorites. Pat and I had also performed together in “Guys and Dolls” before moving to Pittsburgh. So we both enjoyed doing theater.
During the run of the play, I was promoted by IBM from marketing manager of the Mellon Bank account to industry manager in the finance industry marketing group in Princeton. The industry director, my new boss, had already scheduled a planning session for his direct reporting managers at the Pocono Manor Hotel in the Poconos and I was expected to attend. The job was one that I had been eager to get and I did not want the play to impact my performance on the new job. I had it worked out that I could get from the Pocono hotel to the local airport to catch a puddle jumper and get to Pittsburgh in plenty of time for the Friday evening performance.
Then it snowed. I got to the local airport late. The plane was late. Everything was late. And the snow was still coming down. And I was getting worried. The play was due to start at 8 p.m., and I was scripted to be onstage for the first scene. I had to get there in time.
Finally the small plane took off and we made it to the Pittsburgh airport. I hurried out into the parking lot. I knew that I was already late for the cast call. Then it hit me. The parking lot was a sea of snow covered mounds. There were four to five inches of snow on top of every car. I had a general idea of where I had parked but for the life of me, I could not find my car. I was totally distraught. I finally started running down the rows, rubbing snow off cars, hoping to find my car underneath. No luck.
This was before the days of cell phones, so in order to call the church I would have to go back into the airport to a pay phone and lose a lot of valuable search time. Or I could go back to get a cab to the church. That appeared to be my best option when at long last I found the car under a big pile of snow.
I reached the church just minutes before 8 p.m. Everyone was relieved, especially Pat who had no idea why I was so late. Fortunately all of my costumes were stored at the church. I sat for a few minutes to recover my senses, gather myself, and let my adrenalin settle down, and the play went on. (Several years later while living in Europe, we took our children to see the “original” version of the Mousetrap in London. We felt that, except for their perfect British accents, our version of the play was equal to theirs.)
One last stressful adrenalin generating experience worth commenting about came in 1977 when we had just moved to Europe for an assignment with IBM in the Netherlands. I was in Paris to make a presentation to the second in command of IBM Europe on a product launch that I was responsible for. The presentation had gone well but took longer than I had planned. I hurried out of the office on Rue St. Honore to get a taxi to Charles DeGaulle airport for my 9 p.m. flight to Schipol, the last flight of the day. I was eager to get back since our household goods container shipment was due the following morning.
Well, rather than doing the sensible thing of having the office order me a cab, I didn’t want to wait for that and instead went out to hail one down in the street. Busy rush hour in Paris and there were no available cabs. I raced here and there to try to find a cab stand or an available cab. Time was passing and it was past 8 p.m. I was running out of time. Finally I got a cab and in my broken French told the driver to get to Charles De Gaulle airport “Tout Suite,” very fast. We drove as fast as we could and all the while I imagined the problems that I would incur if I did not make it back on that plane. I could get a hotel and spend the night and take the first plane out in the morning, I could rent a car and drive.
My mind was racing. We pulled up to the airport at about 10 minutes to 9. I raced through the airport, sped through customs (few security checks at this point in time) and arrived at the gate at just 9 p.m. The gate was closed, the ramp had been pulled back and the plane doors were shut. I told the attendant that I had to get on the plane. She said that she was sorry but that I was too late. My pulse was racing at top speed. I ran down the stairs and onto the tarmac. The pilot was just ready to start the engines when I ran to the front of the plane and waved my flip chart tube at him. He looked down at me more amazed than anything else.
And thank God, it was KLM and not Air France. Then the exterior steps were lowered down and I rushed up and onto the plane. The surprised stewardess did not know quite what to say when I entered and said” This plane going to Amsterdam?” Several of the seated passengers just looked up with amusement. Just thinking about this experience with today’s security concerns, I was lucky that I did not end up in jail. It took the whole of the short flight for my body to calm down. And I made it back in time for the shipment. Of all the things that I have done, facing down a KLM jet with my attache case and flip chart holder has got to rank high on the list.
We learn from past experiences how much we can tolerate in new experiences going forward. What we also learn is that you build your life a day at a time. What you do one day builds on the days before. You can’t jump through life. You take each day and make it the best that you can with whatever circumstances that day presents. That way, you can look back from where you are and look on a life filled with many exciting and, hopefully, not many overly stressful experiences.
After my experience in the telemetry ward, I was moved back to the regular oncology floor and now had a new objective. Christmas was days away and I wanted to get home by then. So I started questioning my doctor and the nurses about what I had to do to get released. First, I had to be able to get myself up and out of bed. Then to get to the bathroom by myself, to suck up the ball in the breathing device, to be able to walk by myself around the nurse’s station, and to get back to eating whole food.
I also asked Pat to bring my hug-me pillow to the hospital. When you have surgery that cuts the stomach muscles, recovery takes a while. Particularly when you cough or laugh your stomach really hurts. During my ruptured appendix saga in 1983, one of the kind nurses had made what she called a hug-me pillow, which was a blanket of sorts, wrapped up with tape that I could hug against my stomach whenever I coughed or laughed to help moderate the pain. So I knew that I would need the pillow again.
At the time that I had the appendix surgery I was still working as an industry manager for IBM. I clearly remember one day when my boss and a few of my colleagues came to the hospital to see me. We went into a visiting room and they proceeded to tell jokes. Without my hug-me pillow with every laugh, I would have been in really bad shape.
The net of all this is that I proceeded to follow all of the instructions, to do all of the things that I needed to do, and was indeed released from the hospital, with my now normal pulse rate, on the afternoon of December 24th in time for Christmas Eve at home. It was good to be home.
Obviously, I was not up and around much for the remainder of the year, but made it a point to attend church as soon as I could in the New Year. I had been put on the church prayer chain and wanted to thank some of the people who I knew had been praying for me. One cannot underestimate the power of prayer in dealing with serious illnesses. (See Lesson 4.)
I also started to make it a point to start to learn as much as I could about my disease and its treatments. The Internet is a good source of information, although you have to make sure that what you are reading is up to date, particularly in the case of cancer treatments, which can change quite quickly with the development of new drugs.
This was actually the case with metastatic colon cancer. I had looked over the prior year’s annual report on cancer from the American Cancer Society and learned that the five-year survival rate for the Stage 4 colon cancer was less than 10 percent. This was not a good sign, but was kind of substantiated in a hallway discussion that Pat had had with a doctor who indicated that we should get our affairs in order. (She did not share this information with me until some time later by which time my outlook had improved.)
But I rationalized this data with the thought that when the five-year data was compiled from 1997-2002, it could not include the data from the impact of new chemo drugs. I also believed that if 90 percent didn’t make it, that meant that 10 percent did, and there was no reason for me not to believe that I could be in the ones that did. But we knew that we were in for a long haul. (See Lesson 10.)
#h#January, 2004: Dr. Yi#/h#
We now had to find not just a good, but an excellent oncologist to guide us through the next phase of my treatment. And my wife found just such a doctor in Dr. Peter Yi, who has his practice, with several other oncologists, at the Princeton Medical Group on North Harrison Street, just minutes from our house. We had our first meeting with him in the middle of January, 2004.
He recommended starting with another comprehensive round of tests: PET scan, CT scan, bone scan, ultrasound, etc., you name it, to try to determine the extent of my cancer. To schedule all of these tests would take a couple of weeks, following which I was to have a port installed in my upper arm and would start my first round of chemotherapy.
The chemo program he was recommending was called FOLFOX 4, an abbreviation for 5FU, Leucovorin, and Oxaliplatin. 5FU and Leucovorin had been the standard for colon cancer treatment for many years, but Oxaliplatin was a new drug from France that had just been approved by the FDA that month. It was so new that he was not yet authorized to administer it in his infusion room. I would have to go to the University Medical Center at Princeton chemo room for treatment until he received his approval.
He recommended that we have some follow-up scans after the first three months of chemo to see how I was doing, and that, if I could tolerate it, I would continue on the FOLFOX 4 regime for six months. He also recommended that I make an appointment with Dr. Yuman Fong, a liver surgeon, at the Memorial Sloan Kettering Cancer Center in New York City, just in case we needed to consider liver surgery. He said that he and Dr. Fong had gone through medical school together and that “he was the best.” I wrote the information down in my book, but did not take any immediate action on that suggestion. We both felt very comfortable with Dr. Yi.
I have since asked Dr Yi about the American Cancer Society statistics, and he said that with the current chemotherapy and treatment available, he would think that the odds were more like 25 percent. He does not normally discuss odds with his patients since he does not want to discourage anyone, and it all boils down to how the individual responds to the treatment. But I would say that by any indicator you would choose to use, as of now, I have beaten the odds.
Pat and I were starting to get a lot of free advice. It seems that everyone that we knew had some thoughts on what would be the best treatment, alternative medicines, different surgeons, different hospitals, different chemos that they had heard about. It seemed to be never ending. And we did not want to offend anyone, because at that point in time we did not know what the best thing to do was. We were starting to develop a plan, but we were not there yet. It was Pat who made the suggestion that helped us get through this confusing situation.
Dr. Jay Chandler, who had done my first two major surgeries in 1977 and 1983, had retired from his practice but was still consulting and teaching, and was well respected in the Princeton community. Pat suggested that we call him for his advice.
He not only offered to give us his advice but volunteered to come to our house, since I had not yet had my staples removed from the surgery in December and was not too mobile. He spent about an hour with us going through various aspects of colon cancer. He had already viewed all of the scans that I had had to date, including some that I had not even received any reports on. He concurred with the advice we had been given by the liver surgeon in December, and knew and approved of Dr. Yi as our oncologist.
While he said I was in for a long haul, he gave us a good feeling about the program going forward. He did mention there were some troublesome spots in my lungs that should be checked out. He also offered to be on hand for advice going forward, and we took him up on that offer on numerous occasions over the next four years.
The good news now was that when we received offers of advice from others that did not conform to the program that we were on, we could say that we had consulted with this Dr. Chandler on our treatment program and they would back away. We told both Dr. Yi and Dr. Davidson about this meeting and they both knew Dr. Chandler and approved of the idea. Dr. Yi said that his profession was called a practice and that he did not object to our obtaining any guidance we could get. We were starting to develop a plan. (See Lessons 2 and 3.)
At church the next Sunday, I saw the doctor from the Cancer Institute of New Jersey and told him what was going on. He suggested that we meet with a colon cancer oncologist there, Dr. Beth Poplin, to get a second opinion on the chemo plan. What she could add was information on any clinical trials that might be helpful to know about.
We found Dr. Poplin to be a very knowledgeable and helpful person. She concurred with Dr. Yi’s recommendation for the chemo plan. She described in more detail the FOLFOX 4 program and how it fit into the overall colon cancer treatments and talked about some of the side effects that they were experiencing with early trials with Oxaliplatin. She described the then current clinical trials and did not think that any of them would be appropriate for me at that time. We found her very easy to talk to and made it a point to get her opinion several times during the next four years.