Somewhere along the path, all cancer patients probably ask themselves, “Why did this happen to me?” I know that I did. What you learn is that cancer affects all of us. Of the millions of cells that the body generates every day, a certain number are cancer cells. And in most cases, the body’s immune system is able to destroy them. When your immune system breaks down for any reason, then the cancer cells have the chance to take root and multiply, eventually causing problems.
I had shingles in early 2002 that caused a rash, pain, and some serious swelling. The medicine stopped the rash, but the swelling and pain remained for about six months. I have asked if there could be any connection with the shingles and my cancer, and have been told that there is no conclusive evidence to indicate a connection. But I have always wondered whether the shingles attack on my immune system could have paved the way for the cancer.
However, I eventually realized that focusing on the past was not going to help me. What I had to do was focus on what I had now and what I was going to do about it. Getting cancer was not my fault. (See Lesson 5)
I was starting to have appointments with a lot of different doctors and found it helpful to keep a notebook of all of my doctor visits. I have maintained that notebook throughout this whole process and have a record of every doctor visit, every test, and every recommendation that we received throughout the process. I found it very useful to be able to go back to check out who said what when.
I should not pass by this point in the story without making a comment about the problems that I had with my first PET scan. It is a full body scan that will light up any cancer tumors in your body that are large enough to be detected. You start with about an hour of a dye infusion and then proceed to the machine, which is like an MRI machine, with, I believe, a longer and smaller opening. The whole test was to take 42 minutes, either 6 minutes at each of 7 stations or 7 at each of 6, I don’t remember which. But it was 42 minutes and they can’t stop the test once they start.
At the time of my first test there, they wrapped me up with my arms at my sides, kind of like a mummy and I was not allowed to move, even if I wanted to. As I started the test, moving into the machine feet first, I could look up at the top of the machine and could see the countdown of the time left at each station. About half-way through I was starting to freak out. I was getting quite claustrophobic and uneasy. Finally at 35 minutes, I had to call for the nurse to come into the room, which I was told could compromise the balance of the test. The nurse quieted me down, and told me that they had completed all my chest and liver area scans and only the head was not done, so the test was OK as done. The test results did confirm my three liver tumors.
When I repeated the PET scan at that same site a year later, they had changed the procedure so that your hands were above your head and not wrapped around your sides. The nurse told me that the change was due to patient feedback. I handled it much better the second time.
#h#February, 2004: Chemo#/h#
The following Monday, my right arm chemo port was inserted. The insertion involves putting a tube into a deep vein in your arm that empties into the large vein in the chest. There is a port on the underside of the arm that provides easy access for chemo infusion. Also, I found, for drawing blood. And on Wednesday I reported to the hospital for my first chemo session. The hospital chemo room was very nice, with soft leather chairs, about a dozen in all, and a lot of TV sets scattered around. The chemo program was to take three consecutive days. But I found out that the procedures over the three days varied by the organization that was administrating it.
At the hospital, the first day I had a pre-chemo steroid solution, followed by a two hour mix of Leucovorin and Oxaliplatin. I was then fitted out with a 24 hour 5FU heavy brick-sized pump that affixed to my waist, and was done for the day. The next day, a home care nurse came to the house to clean the pump, administer two hours of Leucovorin and reload the pump for another 24-hour treatment. On the last day, she came to the house to clean up the stuff and I was free for the next two weeks until we were to start the process all over again.
One interesting point regarding my first home treatment was the necessity of finding something that could serve as an “IV” pole for the chemo. The nurse and I looked around the downstairs of my home and eventually we settled on an antique clothes pole that Pat and I had purchased while we lived in Europe and used in the front hall as a coat rack. You can imagine Pat’s surprise when she returned home that Thursday morning in February to find me sitting in a chair in our living room with the clothes rack serving as a chemo pole for my home treatment. By the way, trying to sleep with that big pump on my waist was next to impossible.
By the time I had my next chemo treatment two weeks later, Dr. Yi had received approval to administer Oxaliplatin; the treatment was done at Dr. Yi’s chemo room, and the experience was a lot different. The first day was basically the same but at the end of the session, rather than being fitted out with a large waist pump, they taped a small heat activated device onto my arm at my port and attached a small “Baxter bottle,” not unlike a baby bottle, to the pump. I then threaded the cord connecting the device so I could put the bottle in my shirt pocket.
The heat pump would infuse the 5FU in the bottle for the next 22 hours or until the bottle was empty after which, instead of having a nurse come to the house, I would return to the chemo room and have the next day’s treatment.
This was a much more civilized approach and a better use of time than the approach used at the hospital. I just had to watch the bottle, and go to the chemo room when it was empty. I also found that I had a lot more freedom. I could drive more easily; go to the office, etc. The only thing that I did not do was sleep. Not because of the bottle but because of the steroids that they gave me with the chemo. I learned that for the first night of chemo and maybe the second, I would not get much, if any, sleep.
I have been told that having chemo is like having an individual clinical trial. No two people react the same way to a given chemo treatment. And I found that I might have different reactions to the same chemo program at different times. I was able to tolerate the dosage of the FOLFOX 4 that I was given, although I learned from the chemo nurses that a number of people were not able to tolerate the side effects and had to either reduce the dosage or eliminate some of the treatment all together.
One of the early side effects of Oxaliplatin was the intolerance to cold. It comes on almost immediately after your first course of treatment. I could not touch anything cold: the refrigerator door, the mail box in winter, maybe the front door handle, the car door, without getting a kind of shock. The shock was somewhat similar to what you might get from a jolt of static electricity. I found it helpful to leave a pair of gloves on the kitchen table and put them on if I was going to open the refrigerator. I also kept an extra pair of gloves upstairs and often slept with them on. Very romantic.
You also could not drink anything cold, particularly if it had ice cubes in it. If you made the mistake of drinking ice water, you would get sharp pains in the back of your mouth as if you had swallowed some razor blades. You quickly learned what you could do and not do. You also lost your taste buds so most of your food tasted quite bland.
You learn to appreciate the chemo nurses. At the time, in Dr. Yi’s chemo room there were Barbara, Lori, Amy, and Joan. They have a really tough job. Probably no patient in the chemo room wants to be there, but everyone knows that you have to go through it if you are going to have a chance. The nurses approach everyone with dignity and professionalism. And, while they cannot tell you specifics about individual patients, they can tell you a lot about the specific treatment that you are having and help you to know what to expect. Sometimes there are doughnuts or cookies available and when you “graduate,” or have your last treatment, they sprinkle you with magic dust to help you on your road to recovery.
You have to watch the various reactions that your body has to the treatments. Probably the worst was just before my third chemo treatment when I noticed some swelling in my port arm. When I met with Dr. Yi that day, rather than send me to the chemo room for treatment, he ordered an ultrasound test done on the arm but didn’t tell me what was wrong. I asked the ultrasound nurse if the test showed anything wrong. She said “I can’t tell you that. But I can say that you were lucky not to have had chemo today.” When I returned to his office, Dr. Yi said that I had a DVT (Deep Vein Thrombosis) or blood clot in my port arm and he was sending me directly to the hospital. I said “what?” And he said that he was writing an emergency order and I was to immediately check in to the Medical Center.
While I cheated a bit and went home first to leave a note for Pat about this diversion, I then checked into the hospital. This was actually a very serious matter for I learned that if the clot is released into the blood stream it could go to the lungs to cause pulmonary embolism. But they gave me injections to thin the blood to help dissolve the clot, adjusted my Coumadin dosage, monitored me, and in four days it was no longer a problem and I was released.
This turned out to be a fairly civilized hospital experience. Since I was on the cancer floor, I had a private room. I was on a full diet the whole time. No catheter. No IV pole. And I actually slept in my pajamas. Fortunately, the problem never came back again, although I did spend a day in the emergency room about two weeks later when my whole upper body turned red without any obvious reason. After the day spent there, they finally released me and wrote it off as a chemo reaction.
So I was starting to manage it pretty well. You learn how to schedule your life around the chemo. I found out that it took my body about a week to recover after a chemo treatment. That meant that if I completed my treatment on a Thursday, by the following Wednesday or so I was feeling reasonably civilized again and my body functions may be somewhat back to normal. If Pat and I wanted to plan a dinner out with friends, go to a concert, or something like that, we would do it on the off weekend, knowing that on the weekend just following the chemo I would not be in good shape. Also I learned that I could not plan much for the evenings during the chemo sessions. Once I tried to go to choir practice on a Wednesday evening just after chemo and I was very tired and not much good at practice. Dr. Yi said that I should just stay home and rest during those times. So it was basically one week on and one week off.
#h#Am I Going to Die?#/h#
I think one of the first questions cancer patients ask themselves is “Is it going to get me? Am I going to die?” In the early phase of your treatment you don’t know what to expect. You don’t know if the chemo is going to work. You have read so many bad reports about cancer that you can easily get discouraged. And you start having talks with your spouse about what would happen if you were gone.
I had several friends that I sang with in the bass section of our church choir who had different cancers and were not doing well, so I saw the results of cancer all around me. But you realize that neither you nor your doctors know exactly what will happen in your specific case. All you can do is to follow the plan that you and they have laid out and hope for the best. And I developed the attitude that if I was feeling reasonably well, then the cancer could not be doing too much damage. As long as I felt well I felt that I must be OK and had hope. And we stuck to the plan. (See Lessons 3 and 6.)
The good news about the chemo was that it worked. When I had scans at the end of three months, two of the spots in my right liver were gone and the one in my left liver had shrunk to about half of its original size. I was on the right track.
But it was beginning to look like I would need liver surgery so it was time to visit Dr. Fong at Sloan Kettering in New York. At the time Pat and I were not too keen about having surgery in New York as opposed to at some place in New Jersey, but we made the appointment and went to New York City to meet with Dr. Fong.
That turned out to be one of the more important decisions that we would make. He turned out to be both competent and confident. When Pat mentioned that we were all the way from Princeton, he commented that he had a patient down the hall from the Middle East, and that he considered Princeton to be local. He said that the one remaining tumor in my left liver was operable, and that if the remaining chemo treatments did not shrink it any further, he would recommend surgery as soon as we could schedule it. He then gave us a little discussion on what the surgery would entail. I was not anxious to have another surgery but we were glad that we had made contact with him and waited to see what the remaining chemo treatments would bring.
#h#May 2004, Daughter’s Wedding#/h#
My daughter, Kelly, had been married in a small civil ceremony in England in September, 2003. We wanted to have a U.S. ceremony for her as well and had it scheduled for May, 2004, at a nearby British-type bed and breakfast called Fernbrook. One of my objectives with Dr. Yi was that I wanted to be able to schedule my chemo so that I could not only attend the ceremony, but walk my daughter down the aisle and dance the first dance with her. And I was able to do all of that.
It turned out to be a great international party. We had people there from all over; The Brits, Kelly’s friends from when we lived in Hong Kong, her Georgetown classmates, New York City colleagues, and Princeton friends, and our family and friends. I believe that the only problem I had was my hair did not cooperate and was kind of frizzy all day. It was a hot day and it may have been the humidity and not the chemo that affected my hair. I believe that one reason all of Pat’s and my family members attended was not just to congratulate Kelly and Lewis, but was to see how I was doing.
On the evening before the party Pat and I hosted a barbecue reception at our home for our family members, the groom’s family, and some of the international travelers. One guest was Tara Butler, one of Kelly’s best friends from the Hong Kong International School days when I worked for IBM in Hong Kong. She was living in Paris at the time and I remember spending time talking to her about her life there and wondering if I would ever be able to travel abroad again, let alone get back to Paris.
I had really enjoyed my international assignments and the excitement of overseas travel. I had been bitten by the travel bug early in my life and was very lucky to have had opportunities to take advantage of it. The thought of not being able to travel overseas again because of concerns about chemo treatments or surgery was a real damper on my enthusiasm, but there was not much I could do about it at the time, except do the best I could with the program that I was on.
I completed 12 rounds of chemo in mid July and had a set of scans and another colonoscopy. The colonoscopy was normal, but, whereas I was hoping that the scans would show further reduction in the remaining liver spot, they did not. The chemo response had plateaued and the spot was about the same size it had been in April. We now had to discuss our next steps and the proposed liver surgery. It was a disappointment but not the end of the world.
We decided to go back to the Cancer Institute of New Jersey to get an opinion from Dr. Poplin, the colon cancer oncologist that I had met back in January. Taking my latest sets of scans, Pat and I drove up to the New Brunswick facility. Dr. Poplin thought that I had done very well on the first six months of chemo and appeared to have tolerated it better than most patients do.
But when I tried to button my shirt I had difficulty in sensing the buttons. She said “It looks like you have neuropathy.” I said “What is that?” She said that I was in the early stages of peripheral neuropathy, which is damage to the nerve endings in the hands and feet caused by the toxicity of oxaliplatin. Since I had already completed 12 courses of FOLFOX 4, Dr. Poplin said that she would recommend to Dr. Yi that I stop the oxaliplatin immediately, and continue on with just Leucovorin and 5FU until we made a decision on the surgery. When we had our appointment with Dr. Yi the following week, he had talked to Dr. Poplin and said he concurred with the recommendation.
#h#Summer 2004: Neuropathy#/h#
The neuropathy started in my hands and then moved to my feet. I could not sense anything in my fingertips. I could not type at a computer without hunt and peck with the keys. I could not pick up paper clips, pens or pencils without looking at them. I could not feel the change in my pocket. I could not feel a coffee cup in my right hand. To hold a cup I had to put my left hand underneath the cup to keep it from falling. I had difficulty turning the pages of a book or a music score.
It was quite discouraging. Walking upstairs and downstairs became more of a chore. I had to take it very slow and easy, but I could manage. With neuropathy you do not have normal feeling in the front of your feet from the instep to your toes. It’s kind of like walking on a bed of uneven sponges or rags. Walking upstairs you do not have a feel for the steps. And walking downstairs you have to learn to balance on your heels which is not normal, but it works. The feeling in your feet goes from tingling to numbness. Walking barefoot on grass or a driveway would feel like walking on coals or nails. And after walking a distance in your shoes, your feet could bind up. It makes things like driving a car more difficult.
And you can’t stand for any long periods of time. If I had to stand, I tried to find something to lean against so that I could balance on the heels of my feet.
I tried acupuncture for several months to see if that would help but it didn’t seem to make any difference. I was told that I could expect the neuropathy to go away over time. But I have since been to see a neurologist who says that if it has not gone away by now (three years) it is unlikely to do so. So I am left with it. But in the grand scheme of things, if I have traded two eliminated and one shrunk cancer tumors in the liver for the neuropathy, it is not a bad trade-off. I have since learned that FOLFOX with Oxaliplatin is still the first line treatment for advanced colon cancer even though many patients get neuropathy. They have tried to give pre-chemo doses of calcium and magnesium to offset the problem, but nothing seems to work. So the neuropathy will probably continue to be a byproduct of colon cancer chemo for the time being.
We are fortunate enough to have a backyard pool, and one thing that I enjoy in the summer is swimming. And other than using a service to open and close the pool, I normally take care of checking the chemicals, cleaning out the skimmer, and otherwise maintaining it in swimming condition. Imagine my surprise when I put my hand into the skimmer to clean out the debris and got a bit of a shock. And then I tried to put my foot into the pool to test my ability to swim. No way. The neuropathy made it too uncomfortable. So while I did my best to keep the chemicals up to snuff, I was not able to swim at all the summer of 2004. Very disappointing.
Also I could not button or unbutton my shirts. The worst thing was buttoning shirt sleeves, which I would normally do with one hand but now could not manage at all. So for the next six months Pat had to button up my shirts in the morning and unbutton them for me at night. It became a daily ritual. I was also worried about how I was going to be able to hold my new grandson in December. And I did find out later that due to the neuropathy, I would no longer be able to wiggle my ears for my grandchildren. But that is all getting ahead of the game.
#h#October 2004: Liver Surgery#/h#
The next step was to see Dr. Fong again and schedule the liver surgery. We had consulted with Dr. Yi and determined that while the chemo might slow the cancer down, the only way to get rid of the tumor in the left side of the liver and go for a cure was surgery. So we made the appointment to see Dr. Fong in New York City. By this time our daughter, Kelly, had a job with ESPN and was living in Manhattan, so we were able to combine a doctor’s visit with a lunch with her. We started trying to make the New York trips a family visit with a side trip to the doctor instead of the other way around. That way they became a fun day in New York, although I was frequently carrying films under my arm during the day.
In any case, Dr. Fong wanted to schedule the surgery for October. I had to be off of chemo for a month before the surgery so we had to coordinate the surgery date with Dr. Yi. We had a vacation planned at our time share in Longboat Key, Florida, in the middle of October and we needed time for the pre-admission testing. So we scheduled this surgery for October 26 at Memorial Sloan Kettering Hospital.
We were searching for as much information on colon cancer as we could find. There was not an official colon cancer support group in the Princeton area, so I tried to find out as much as I could from informal sources. A Cancer Care counselor came to Princeton once a week, and Pat and I met with her to get any information that she might have. I also got several phone numbers for cancer survivors around the country. In September we went to an anniversary party for one of our neighbors and met a colon cancer patient there who had had the liver surgery and needed to have a liver chemo pump installed. It had not gone well for him and I vowed to avoid a liver pump if at all possible. You learned quite a bit by talking to people who had been down the path.
Pat and I also talked to a number of people in the Princeton area who, while they did not have colon cancer, had been successful with other cancers. There were several from our Coldwell Banker office who had had successful outcomes working with Dr. Yi.
Dr. Lyn Ransom, the founder and music director of the Voices Chorale, had been diagnosed with breast cancer shortly after my colon cancer diagnosis. She has recovered well and I continue to be impressed with her energy and enthusiasm in directing Voices rehearsals and concerts. I don’t know how she is able to stand for such long periods of time. I guess that if you are going to be a choir conductor, it comes with the territory.
Two of my fellow basses in Voices have had bouts with prostate cancer and seem to be doing quite well. And Stuart Pope, a bass member of our church choir and a past president of the Voices Chorale, had fought cancer for over 12 years before passing away in early 2005. I would often see him and his wife in Dr. Yi’s offices. He was singing and playing the church organ up until the end of 2004, and he continues to be a strong inspiration for me.
We were also getting a lot of requests from family and friends for updates on my progress. So we set up three layers of E-mail lists; first to our immediate family including our son Scott, his wife Cristina, and our daughter, Kelly. The second list was to our brothers and sisters. When we started this journey, she had two living brothers who were on our list. I have four brothers and a sister. So that was the second list we used. And thirdly there were the various friends and business associates who wanted to be updated.
That list continued to grow over the course of my treatments and currently has about 50 names on it. Over the four years we have received innumerable E-mails, encouraging cards, calls of support, and visits from these family members and friends. Next to the caregiver, I feel having a reliable network of family and friends is a very important part of dealing with the cancer experience. (See Lesson 7)
After an abbreviated vacation at the timeshare on Longboat Key, we returned for pre-admission testing. Everything went well and I was good to go for surgery the following week. One pre-admission test I had done before the Florida trip was a stress test by the heart specialist that I had met in the hospital in Princeton and that test was fine. Dr. Fong wanted to make sure that my heart was OK before going after the liver.
Our daughter offered to have Pat stay with her at her New York apartment during my hospital stay. This worked out extremely well since her apartment was on Lexington Avenue only about six blocks from the hospital. And a neighbor and fellow church member, John Powell, had agreed to drive us up to the hospital for my 5:30 check-in for the surgery. So all was set.
About 4 in the morning on October 26 we left 43 Beech Hill Circle for the Memorial Sloan Kettering Hospital on York Avenue on the East Side. We arrived in plenty of time for my check-in and prep time. It turned out that John Powell had spent a summer as a cab driver in Chicago, so the city driving was no problem for him. I was to be Dr. Fong’s first surgery that day. We learned that he operates primarily on Tuesday and Thursday, two surgeries a day. On Monday he has office hours, on Wednesday and Friday he catches up on the surgeries that he might have as emergency cases. All told he does well over 200 surgeries a year, all either liver or stomach-related cancer operations; probably more than any other surgeon in the United States.
My wife continues to be impressed with the treatment that patients get at Sloan Kettering. At the doctors’ office building someone meets you at the door to make sure you know how to get to the right place. At the hospital they take special care of the patients checking in for surgery. They obviously know that anyone that shows up at their door is there because they have something serious going on in their bodies and they want to do their best to make people feel at ease and comfortable. Pat particularly has remarked about the live orchids in the doctor’s waiting room.
As far as I know the first liver surgery was pretty straightforward. He made a straight vertical cut to line up with my colon scar. Then he took out one section of the left side of my liver, checked out the location of the original two spots on the right side of my liver, and looked around to see any additional traces of cancer. Found nothing. Then he stapled me up. I learned that the liver has eight sections; four on the left and four on the right. When you take out a section of the liver, it does not grow back but the remaining sections enlarge to fill in for the missing section. So in effect you end up with as much liver as you started with, only fewer sections.
I woke up in a recovery room that was quite different from the recovery room at the University Medical Center at Princeton. As memory serves me, this was a large room with monitor screens all around. Each patient who had been operated on that day (and I think that they had upwards of 15 operating rooms, with maybe two operations each) was in a separate curtained-off space in the large room.
There was a control facility in the center of the room. Each patient had monitoring equipment connected up to the control facility. And you spent the night there instead of being moved to a hospital room. My wife, son, Scott, and daughter, Kelly, all were there for my first Sloan Kettering surgery. One of the things that Pat remembered most about the whole experience was the intensity of the atmosphere in the recovery room. She said that it reminded her of the CTU set in the TV show “24.”
Around mid morning the next day, someone came in and announced the room assignments and you were rolled off to the hospital room where you would spend the rest of your stay. They probably found over time, and with the type of surgeries that they were doing, that the central controlled recovery space was a more efficient way to do it and had better results for the patients. When we had questioned Dr. Fong about the problems we had read about blood loss involved in liver surgery, his comment was “Not on my watch.”
My first stay at Sloan Kettering was somewhat uneventful. I remember my first day with all of the supporting paraphernalia: vibrating booties, catheter, IV drip, pain medicine apparatus, as well as the ball apparatus to suck up to test your lungs and the iced swabs to suck on in lieu of water. And my hug-me pillow that we had brought from Princeton.
As soon as I could, I started questioning the doctors about how soon I could get out. Their original prognosis was a 7 to 10-day hospital stay. The first thing I had to be able to do was to swing myself up and out of bed. That involved twisting my lower body so my feet would be over the side of the bed and then swinging my upper body up so that I was in a sitting position. And from there I would move down to a stand up position so that I could walk. The first day in the room they had me walk around the nurse’s station, although I was a bit slow and required someone to help hold me.
Since Pat was staying at Kelly’s apartment on Lexington Avenue, she would come to the hospital every morning to be with me, and help me on my walks. By day three I was up and about on my own. I believe they told me that when I could do 15 rounds around the floor I was a candidate to be released, so I worked on that objective. In any case, I got released in six days. Not that I was trying to set any kind of record, but I felt that I could recover better at home where I was not getting poked and prodded every few hours.
The one thing that I remember about that first visit to Sloan Kettering was my roommate. He was from Long Island and would get phone calls and visitors at odd times of the day. During most of the phone calls he would say things in a low Godfather-like voice like “Thank you for that information” and “I am so glad that you brought that to my attention.” And when people came to visit they would always talk in hushed tones. Most of his visitors came late in the evening. I thought that he might be a member of the Mafia and was continuing to conduct his business from his hospital bed. Only in New York.
Once home from that surgery, I recovered pretty quickly. I did go back on chemo for three months for what is called adjuvant therapy, but that was uneventful. When Pat and I went back to see Dr. Fong for a follow-up visit and to have my staples removed, he was very pleased with my progress and said “I hope that you never have to see me again,” meaning that he hoped that I was cured. And I hoped so as well. Then Pat and I went out for lunch to celebrate.
#h#Your Body and Your Mind#/h#
My son, Scott, and his wife, Cristina, were expecting their first child, and our first grandchild, in December, 2004. Pat arranged a baby shower at the Nassau Club in Princeton. My brother, Jim, and his wife, Janet, came over from Philadelphia for the day; Janet to join the ladies at the baby shower, and Jim to talk to me at home while I recuperated.
Jim has been suffering from Parkinson’s for about five years and has all of the normal symptoms; difficulty talking, some palsy, and in general moving at a slower pace. He discussed with me a concept that I had not thought about before. That is that, while he may have physical difficulties with his body, he still had control over his mind. And he found comfort in separating his still intact vibrant mind from his physical being. We talked about that concept for the better part of the afternoon while the ladies were out.
I have thought about that concept a lot over the past three years and truly believe that if we focus on the things that we can do, particularly with our minds, that it can help balance out the problems that we may have with our bodies. We may not have had any say in the diseases that we may have, whether it is Parkinson’s, cancer or something else, but we do have a say in how we respond to them. (See Lesson 8.)
And on December 12, 2004, our first grandchild, Xavier, was born.