#h#2005: Optimistic Outlook#/h#
The year 2005 was pretty good. I wrapped up my chemo treatments in February and started to live life as normal. Pat and I went to the Coldwell Banker International Business Conference in Orlando in February, a recognition event for the top performers of the previous year. I got back to singing in Voices, where I had missed most of 2004, and was able to sing in the performances of Saul and Beethoven’s Ninth. We also went to Carnegie Hall to hear Kelly sing in the Verdi Requiem. Then to Savannah to Pat’s brother’s daughter, Jessica’s wedding. We had the dedication of the Methodist Church Education Building, a project that I had worked on for about eight years. And I joined a Bible study group that met on Thursdays at our church. It was primarily men, but there were a couple of women there as well, and it became an excellent support group for me. And in between all of this I was seeing Dr. Yi and having scans. Everything was normal. I was beginning to have the feeling that I was cured.
That summer I could swim in the pool again. We got caught up with friends and in September went to California for the wedding of my niece, Josie, at Yosemite, followed by another set of normal scans and then a two-week trip to Longboat Key in October.
We finally decided in November to have my port removed so I would not have to put up with having it flushed once a month, taking Coumadin to thin my blood, and worrying about having another deep vein thrombosis. Our real estate business was going along as well as could be expected, and, that November, I sang in Carnegie Hall again with Voices. I was keeping up pretty well. I told the minister at my church that I would be willing to serve on a couple of church committees. I had been quite active at the church up until my original cancer diagnosis and felt that I once again had the ability to use my talents to serve in that capacity. Life was pretty good again and I was feeling good and perhaps somewhat overly optimistic about the whole process.
I have had people tell me that they are amazed about my positive attitude through the whole cancer experience. I tell them that, while I appreciate their comment, that it is just the way that I am. I am not doing anything special; just acting normal for me. As I have thought more about that trait, I believe that it is something that I acquired as a child growing up in Bowling Green Ohio. (See Lesson 9.)
It was an idyllic existence. Bowling Green was a small town of about 14,000 people in Northwest Ohio with none of the disturbing things that you read about today. My dad was a college professor at Bowling Green State University. My mom was the daughter of a Minnesota farmer. They had six kids, five boys and a girl.
One event that affected my early development came when I was about 12 years old. Mom had sent me to the Kroger store, about five blocks away, to pick up some groceries, including celery and a bag of sugar. Since it was during the rationing time of World War II, she had equipped me with the necessary ration stamps for the bag of sugar and money for the purchases.
I remember walking to the store, getting the groceries and coming home, whistling and happy about having successfully done my chore. I was not focusing at all on the grocery bag. Then when I got home, all hell broke loose. The wet celery and the bag of sugar had come together in the grocery bag, opening a hole through which about half of the sugar had spilled out somewhere along the sidewalk during my walk. My dad was livid. I had carelessly lost half of a month’s ration of sugar. While my mother was understanding about the situation, as she normally was, Dad proceeded to lecture me on my perceived lackadaisical attitude. Whether rightly or wrongly, he wanted me to get the message and to make it a learning experience. Pay attention to what you are doing. He made an impression on me that I obviously remember to this day.
He was also a firm believer in the value of education as well as the need to always use the skills that you were given. And he strongly imparted those values to his five sons, each of whom ended up with advanced degrees. He didn’t have to say much. Just a few words and maybe the look on his face were all that it took to show either his pleasure or his displeasure with your performance. My brothers and I spent a good part of our early lives seeking acceptance from our father. And maybe that search for acceptance helped established a positive attitude in each of us. I learned that whether it is carrying groceries home from the store, studying to get good grades, or fighting cancer, you always do the best you can with the skills that you have.
When I was 15, I had an opportunity to work at Boy Scout camp as one of the two camp buglers. I had taken cornet lessons in elementary school, but had stopped in junior high. I had worked hard at the Scout achievements, had achieved the rank of Eagle Scout and somewhere along the way, I had convinced someone that I qualified for the Bugler merit badge, so I appeared to be a good candidate for the camp staff.
The other bugler and I were to alternate the playing duties. These involved climbing the flag pole and playing reveille, morning flag ceremony, mess call three times a day, evening flag ceremony, and taps. Also fire call, if needed. After we had gone through several days of this, the staff counselor called me into his office. “Cooke,” he said. “You are the worst bugler that we have ever had.” I was devastated. It made no difference to him that just two weeks earlier I had received the American Legion Award as the outstanding boy graduating from Bowling Green Junior High School. He had a more practical problem, which was helping run a scout camp. And he was probably right. I had been trying to get by on my reputation. I probably had not practiced as much as I could and thought that I could get by, but when you are at the top of the flagpole with just yourself and the bugle, there is no place to hide. And since my father was the scoutmaster of our local scout troop and active in the area councils, getting sent home was not an alternative.
Well, the net of the discussion that followed was that he was going to talk to the other, more proficient, bugler about taking over all of the duties and I was going to split my time between working in the camp store and serving as a lifeguard, all 115 pounds of me. I did have the swimming, lifesaving, rowing and canoeing merit badges so was actually pretty qualified in the aquatic stuff. (I had not applied for a lifesaving position in the first place because I was too light.) He also wanted me to practice the bugle in a cabin removed from the main camp site so I would be ready in case of need. Back then they called it “wood shedding.” So that’s what I did. And at the end of the summer, the counselor called me back into his office to congratulate me on taking the reprimand, and doing a commendable job in the alternative assignments. As my father would say, showing a little “gumption.”
I came off the Cooke Family payroll at a fairly early age, by today’s standards. My first job, a paper route delivering the Toledo Blade, at age of 11, helped pay for my candy bars, Saturday afternoon matinees at the local theater, occasional stamps on approval and my comic books. (Whatever happened to my Superman comics is beyond me. I should have kept them.) I got my first salaried job at age 15, working in a shoe repair shop for 25 cents per hour, and I opened my first savings account.
At 16 I was able to step up to 65 cents per hour at the Kroger store, bagging groceries, stocking shelves and eventually working up to a check out cashier and produce clerk. Having been accepted for an NROTC scholarship, my tuition, books, and fees were paid for my undergraduate education for the first two years at the University of Missouri and the final two years at the University of Michigan. What with the money I had saved working at Kroger, and the food bills I avoided by washing pots and pans at a nearby sorority house, I believe that my cost to my parents for my entire college education was the sum total of $25 for a round trip train trip from Missouri to Ohio during a spring vacation. And with the money I had saved in the Navy and a part-time job working in the internal audit department of the university, I was able to pay for my Michigan MBA and took a $500 a month computer sales training job with IBM debt free and ready to take on the world. Hopefully the self sufficiency and positive attitude skills I learned then have also helped me to take on my cancer. (See Lesson 9.)
#h#2006: Back to the Hospital#/h#
I had claimed victory too soon. My scans at the end of January showed a new spot on the right side of my liver. To say the least, it was a bummer. Dr. Yi had previously discussed with me the possibilities of a recurrence. He said that there would be about a 50 percent chance that metastatic cancer could reappear. This would be caused by microscopic spots that were originally too small to show up on scans and after about two to three years they would finally be large enough to be seen. They were not new spots, but ones that had been there since the first metastasis and had survived the chemo attacks.
So back we went to New York to see Dr. Fong. He confirmed that I had a spot in the right side of my liver, one that he had not seen when he had opened me up 15 months before. He said that he saw nothing else but the one spot and, since the previous chemo therapy had not worked on this spot, that the best solution for a cure was not additional chemo but to operate. We agreed and set the date for my next surgery for March 30.
I had a couple of things to get wrapped up. Pat and I were scheduled to go to San Francisco for the Coldwell Banker 100th anniversary International Banking Conference. We did attend and saw a number of our California friends. Since my first liver surgery, Dr. Yi had put me on a one glass of wine a week limit. However, he agreed that while in California I could expand on that limit to taste some more California Sonoma Valley wines. And I did indeed.
We also saw Kelly sing at Carnegie Hall again. She was getting way ahead of me in Carnegie Hall appearances and, with my three lifetime appearances so far, I will probably never be able to catch up. There were also some Voices concerts in early March in Pennsylvania and Pennington where I wanted to sing and was able to do so. I could not stand for long periods of time without the neuropathy causing cramping in my feet, so I arranged with our director that I would sit while singing. I continually found singing to be a source of personal inner satisfaction and my voice seemed to be holding up fairly well through all of this.
#h#March 2006: Sloan Kettering#/h#
We knew the drill, and the surgery and recovery were uneventful. This time the cut was an inverted L shape with the bottom of the L running horizontally across the right side of my stomach. The thing that made it interesting this time was again my roommate. He was apparently running a business from his hospital room. I found out that he was a consultant to some non-profit organizations and did not want them to know that he was in the hospital. He had a private nurse running a phone setup so callers got him directly on his business phone number and would not know that he was in a hospital. He was taking calls all of the time.
I finally asked one of the nurses why he was not in a private room. Maybe his medical plan did not cover it, although the nurse he had was there full time during the day and, I think, at his expense. In any case, by the end of my stay we were talking and he turned out to be an interesting guy. He was actually a doctor who, in addition to the non-profit consulting business, was advising patients from his hospital bed. Very ingenious.
Pat, who was staying again at my daughter’s apartment, would bring me the paper every morning and stay with me in the room for the better part of the day. I encouraged her to take the opportunity to see some museums if she had the chance. I looked forward to her arrival every day.
Kelly was a frequent visitor. According to her remembrance, when she took me on one of my early walks around the nurse’s station, I was cruising the floor humming a tune from Star Wars. Scott, who works in Princeton, was able to visit on the weekend, and was responsible for bringing me my first Sudoku puzzle book. My brother Jim and his wife, and my minister and his wife all came to NYC to visit with me at the hospital.
I spent much of my free time in the hospital working on the Sudoku puzzles. Dr. Fong would even give me daily puzzle objectives as part of my recovery procedures. I could do some fairly difficult ones but not the hardest. Today my brother, Allen, from Williamsburg, Virginia will send me “evil” puzzles from WebSudoku that he claims he can solve in 20 minutes. I have difficulty solving them. I think he is subtly trying to prove to me that his MBA from the University of Indiana is better than mine from the University of Michigan. And again, I made it out in six days. It was a very civilized hospital experience and I was in very good spirits when I left.
At home, spring was coming. My son helped with the yard work and I was able to rest up out on the deck. By May I was able to sing in one of the Voices concerts, open the pool, and go swimming. In June Pat and I took a trip to Tucson and then to Dallas for the wedding of my brother Dan’s daughter, Gretchen. All seemed well again.
#h#July 2006: To the Lungs#/h#
Not so fast, Cooke. Just when things were looking good again, my scans in July showed growth in both the number and size of pulmonary nodules in my lungs. PET scans confirmed the problem; and, to compound matters, while I was having my PET scan, Pat fell at the doctor’s office and broke her ankle.
We were back in the trenches again. I had a new arm port installed; left side this time and went back on chemo. This was a new chemo regime called FOLFIRI plus Avastin. FOLFIRI is the familiar 5FU and Leucovorin plus a newer chemo called Irinotecan or Camptosar. Avastin is a new drug that is technically not chemo but is a monoclonal antibody that uses anti-angiogenic therapy to go after the blood supply of cancers. Irinotecan, I learned, causes you to lose your hair while the prior FOLFOX regime did not.
So here we were. I started chemo the first week of August and by the end of August my hair started falling out in clumps. I also found out that I didn’t need to shave as much as normal. But I figured that if the chemo caused me to lose my hair, it must also be creating problems for the cancer cells.
The chemo regime this time was a little better since they now used a 46-hour Baxter bottle, twice the size of the former one. They had also eliminated the second day Leucovorin dosage. This meant that I did not have to go to the chemo room on the middle day of treatment, just go around with my bottle. I bought a belt pack to wear it in and most people probably did not know that I was on chemo. I was tolerating the chemo but did have a number of different side effects from my first go-around in 2004. It increased the neuropathy in my fingers, and I had a lot more fatigue. Naps every afternoon.
I should comment that during the course of my journey, Dr. Yi is the doctor that I see the most. When I am on chemo, I see him every week; the first week to make sure that my blood counts are good enough to start the treatment that day, and the next week to see how I am responding to the treatment. If you figure that I was on chemo for most of 2004, about half of 2006, and some of 2007, I must have seen Dr. Yi more than 60 times. Pat has gone with me for most of those visits.
The routine is pretty much the same each time. I have blood drawn either at the lab or from my chemo port, and then see Dr. Yi after the blood results are back. He comes into the procedure room always smiling and upbeat. He reviews the results of my blood tests, and discusses my next treatment. He is always both professional and yet compassionate.
Pat and I will ask him any questions that we may have. No question is too stupid, simple or complex for him to give us his honest opinion. He encourages us to get second opinions if we think them necessary. If I have just had scans or other tests, he reviews the test results and gives us his views on what they mean. And he is on top of his game. We trust him immensely and are very fortunate to have him available so near to us to advise us. And he must appreciate having a patient who is responding so well to the treatments.
He also has two sons; one of them sang at the American Boychoir School, so he is very familiar with music. Often after we are through discussing cancer, he will ask about my singing experiences.
After almost three years in the battle, our activities started to fit into a routine. I was determined that I wanted to be able to control my life and not let the cancer control me. In September, 2006 we took time out to go to Ohio and Michigan for my high school reunion and visit old friends. And in October Pat and I went back to Longboat Key for our annual “R & R” visit. But we were not sure what my long term prognosis was going to be. I did not seem to be able to keep ahead of the cancer. It was hard sometimes to remain positive. As my hair kept falling out, I started wearing hats, and have a collection now of various hats and caps. I guess the most important thing that I learned was to just take it a day at a time. (See Lesson 11.)
Finally in November, we got some good news. My scans then showed the largest nodule in my lungs had shrunk to about half its original size; the second largest nodule had shrunk as well while the rest were unchanged. And there were no new nodules. Hurray! Dr. Yi started talking to us about treating cancer as a chronic disease, like high blood pressure, diabetes, or high cholesterol. I could be treated but not cured. We would continue the chemo until I had been through 12 courses, which would take us through the middle of February, have scans again and consider my next course of action.
I was continuing to sing as much as I could in both the church choir and the Voices Chorale. Voices was planning a trip to Germany/Italy in the spring and I wanted to go if I could. I told Dr. Yi about it and he said that while singing was good for both my lungs and my mental health, he was not ready to approve me for an international trip just yet. He was concerned about what kind of medical care I might need in case of an emergency. We would monitor my condition, see how I progressed, and hold off on a final decision until after the first of the year.
We had been looking for a new car for my wife for some time, but had not found the right vehicle and had been holding off until we knew more about my condition. Since things were starting to look up, we bit the bullet and bought her a low-mileage certified pre-owned vehicle the Saturday after Thanksgiving. She just loves the car and we were fortunate to have made the decision we made when we made it, because just two days later we got some very unfortunate and unexpected news. If we had waited just a couple of days, we probably would not have bought the car. Timing is everything.
On the Monday after Thanksgiving we found out that our almost two-year old grandson, Xavier, had acute lymphoblastic leukemia (ALL), the most common form of childhood cancer. And to complicate matters further, his parents, Scott and Cristina, were expecting their second child in March. Xavier prepared to start a six-months program of intensive treatment and chemo at the Morristown Children’s Cancer Hospital. Then on December 28th we learned that Pat’s brother, Buzz, had died in a fire in the bed and breakfast inn that he and his wife owned in Franklin, North Carolina. He left behind his wife, Nancy, and three daughters. We had more than our fair share of challenges to deal with.
Pat and I occasionally went to an inexpensive restaurant in nearby Montgomery but had not been there since I had started this latest period of chemo. When we arrived in January the assistant manager came over to our booth say hello. I had already taken off my hat. She commented that she had not seen us for some time and then said that she thought that I had “the look.” I knew what she was talking about since at that time I did not have much, if any, hair and was a little pasty from the chemo treatments. I tried to pass it off. Pat later found out that her husband had been treated for cancer, so she was familiar with “the look.” I vowed to do my best to get rid of it.
In February, 2007, things for me started to improve. My scans showed the lung nodules were still stable, and sub-centimeter in size and, with recommendations by both Dr. Poplin and Dr. Yi, I started on an indefinite chemo holiday and my hair started to come back.
#h#A Look Back#/h#
Thinking back to the start of all of this in 2003, I remember that at the beginning of the year things were looking good for the Cooke family. My wife and I were in good health, or so we thought and looking forward to celebrating our 35th wedding anniversary that year. We had two healthy children who had graduated from reputable schools, Colgate and Georgetown. The previous year, our son, Scott, had married a wonderful, talented girl, Cristina Egge, from Arlington, Virginia, whom he met at grad school at the University of Michigan. Her mother was originally from Madrid, Spain, so the ceremony was held at a church in downtown Madrid and the reception at a castle just outside of town.
Our daughter, Kelly, was dating a tall handsome Brit from England whom she had met in Hong Kong. Since both had lived overseas for a good part of their lives, overseas travel came natural to Scott and Kelly as well as to Pat and me.
So life was good. I had completed a successful career with IBM that had taken me from Jackson, Michigan to Detroit, to Pittsburgh, to Princeton, to Holland, to Paris, back to Princeton, to Hong Kong and then to an early retirement. Since 1995 I had been working with my wife in real estate in the Coldwell Banker Princeton office where she was one of the top agents. We had a nice home in Princeton Township, and had a one-year-old collie named Luke.
I had been instrumental in getting a scholarship in memory of my parents set up at Bowling Green State University in Ohio where my father had been a professor for years. Many BGSU people and my siblings have donated to it over the years and I believe that it is currently the largest non-corporate scholarship in the business school there.
And I had spent 10 years on the board of trustees at my church and had been on the capital funds and building committees for the major renovation and building of a second story addition to the church education building. As a result of our stock gifts to the capital funds drive, Pat and I were eligible to have one of the newly renovated classrooms dedicated to the memory of our parents.
I have had a number of memorable experiences over my life, like singing in Carnegie Hall and spending eight years with my family living and working overseas with IBM in three countries. But the 40-year success of our marriage, and helping Pat raise two intelligent, educated, talented and capable children, along with the setting up of the BGSU scholarship and the renovation of the education building at the church with the dedicated church classroom, have got to be four of the proudest accomplishments of my life.
I would also have to add that today I am especially proud of my grandson, Xavier, in his courageous and, so far, successful fight against childhood leukemia. I went to help out with his chemo a couple of times at Morristown Memorial Hospital, where his watchword was “no ouchies.”
In 2003 Pat qualified for a Coldwell Banker expense paid trip to the Breakers Hotel in Florida. And I tagged along. We were going back to Europe in May with the Voices Chorale to sing in Bavaria and Austria. And we were planning to travel to our time share at Longboat Key in Florida in October and to Hilton Head in December for a reunion with Pat’s family. I went to my doctor only once or twice a year to check out normal stuff like cholesterol, blood pressure and PSA. I may have been a bit over optimistic about how well things were going for us. It was a busy and exciting life.
Then we got hit with cancer. It was a bolt out of the blue. Getting hit with cancer changes how you look at things. It scares you. And you start to think about how the life of the people around you would be impacted if you were not there. But you then realize that you could just as easily get hit by a car or something else, so you can’t focus too much on that problem. Then, it made us aware of the number of people who we knew that were facing difficult illnesses. As we started to inform people of my situation we became knowledgeable of many other people who were dealing with or had dealt with potentially life threatening diseases. I have already mentioned a few of them. And it makes you appreciate what they are going through all the more.
It also makes you aware of the high cost of cancer treatment. I was fortunate to have Medicare and a supplemental retiree medical plan from IBM, although they are increasingly asking retirees to shoulder a larger cost of the plan. But if you look at the gross cost of a single week of chemo treatment, it can make you shudder.
In any case, getting hit with cancer makes you appreciate more the days that you have.
Now I try to get the most that I can out of every day. I keep lists of things to do and try to focus on the most important things, for the day, the week, the month, and the rest of the year. I am hopeful that I will be able to keep going for a long time. I want to make the best of the remainder of my life and also make the best of my time with my wife, family, and friends. I don’t want to look back when and if they tell me that the cancer can no longer be treated, which could happen some day, and find something that I could have done and didn’t. (See Lesson 11).
So let’s fast forward to today.
Our grandson, Xavier, has completed his six-month intensive leukemia treatment program successfully and is now on a 2 1/2 year maintenance program. He had lost his hair and the steroids he was on caused some irritability and weight gain, but that is behind him now. As an aside, we have some interesting pictures of him and his grandpa when both of us were kind of bald. His hair has now come back in a youthful brush cut and he is running around like a typical 2 1/2 year old. And he is a big brother now. His sibling, Charlie, was born March 2 and is a delightful baby.
I continued on my chemo holiday, and was able to work on the church endowment fund committee. I was able to sing in two performances of Brahms Requiem and also to go on the Voices trip to Europe. I was worried about problems with my feet while standing for the concerts so I took along a folding chair that worked out well. I also took a cane that helped while walking the cobblestone streets and in particular going up and down the bridges in Venice. The weather was not so good in Italy, but the singing was excellent, and I was glad that I was able to handle the trip without any medical problems.
My hair came back fuller than before, and in May I had my first haircut in eight months. Our summer was probably the best we had since 2003. Pat and I enjoyed the pool and also entertaining on our new deck. We were particularly enjoying visits from our two grandchildren. My energy level was high and I was feeling better, both mentally and physically, than I had in years.
And I had three birthday parties. My birthday is the 4th of July, so there is always cause for celebration. But this year turned out to be special. I had a family party with my grandchildren and a neighborhood party where I annually get to cut the cake. Then, to top things off, I had a special, totally unexpected surprise party from the Coldwell Banker office orchestrated by my wife, one of the agents, and the office manager. And everyone had a good time. I know that I did. I feel that my wife and I are truly blessed to have such a strong network of family and friends who are sincerely concerned about my wellbeing. (See Lesson 7)
We had a memorial service in Detroit in July for Pat’s brother and have come to some closure on his untimely death. On a happier note there, one of his daughters is expecting the first grandchild. And we were able to attend my the wedding anniversary party of my sister, Janet, in Indianapolis in August.
However, my scans at the end of August showed growth in the lung nodules for the first time since November, 2006. Another setback to deal with. I was quite discouraged since I had hoped that the chemo holiday would continue for some time to come. But that was not to be. I was beginning to feel a bit like Job from the book in the Old Testament. We had studied it in my Thursday Bible study group. If you are familiar with the story, Job was continually tested by Satan but his faith in the Lord helped him overcome adversity and he ended up stronger that before. If you are not familiar with the story, it is located between Esther and Psalms a little over halfway through the Old Testament.
The largest nodule had grown back to the size it had been when we started focusing on them in July, 2006. It now looks like the length of the chemo holiday has given the cancer a new chance to grow. Dr. Yi recommended that I immediately go back on chemo, and I started my treatments again the first week of September. When I started having the fatigue that comes with the chemo, I remembered how good I felt last summer.
And I am convinced that whatever it takes this time around, I can deal with it. My hair has already fallen out again, so, hopefully, that means that the chemo is doing its job. Over time, we will try to keep the nodules sub-centimeter in size so they cannot do much damage. But for the time being, it looks like I could be on a program of six months on and then some time off. And, hopefully, this might just last for a long time.