James Cosgrove's Journey

by Joanne Cosgrove

"THIS ONE'S FOR YOU" Wherever You Are
(Song by Barry Manilow)
dedicated to my loving husband James Cosgrove

July 2002

It was a condition that had been going on for quite some time. Jim had difficulty swallowing food. I would watch him from the corner of my eye. He never sat down at meal time, he was usually standing or doing something other than trying to digest his food. Heartburn was Jim's constant complaint and he lived on Rolaids for over 20 years. I asked him one evening why he appeared to be having difficulty in swallowing and he brushed it off as nothing. Several days later I could see how uncomfortable he had become and insisted he call the doctor.

A week or so later with some reluctance, Jim finally agreed to make an appointment with our primary care physicians. On the day of his appointment, I asked him to call me at work as soon as he returned home. When he called, he said he was told by one of the doctors that he needed to see a gastroenternologist. We have been using these doctors for years, so I became quite annoyed that he was sent away without receiving a referral of any kind. I called the office back and asked to speak with one of the doctors I had been seeing and happened to like very much. Dr. Superio Jao called back within minutes and I told him about Jim's problem. Dr. Jao asked if it were possible for Jim to return to his office immediately and he would see him. I was so relieved and thankful that my doctor took an interest in Jim's problem and I am forever grateful to Dr. Jao for his concern and guidance. He has always made himself available to me whenever I needed it and if there were ever a time I needed a good doctor, this was it. Little did I know just how invaluable Dr. Jao would be to me in the future. I cannot thank him enough for always being there.

After he examined Jim, Dr. Jao felt that he did indeed needed to see a GI specialist however, he called a colleague of his and an appointment was made for the following day. I took the day off from work and accompanied Jim to meet with the doctor. After answering several medical questions, the doctor examined Jim and ordered a battery of tests. He also needed to have a barium swallow test and within a day we were able to get one done. I remember Jim coming out of the exam room with a chalk-like substance covering the outside and inside of his mouth. He had been in the examining room for so long I was beginning to worry but other than not enjoying the taste too much he didn't complain and we headed home.

We had no sooner reached our front door when the telephone began to ring. Jim raced through the front door to get the call and when I stepped into the kitchen I could see the look of panic on his face. It was the doctor's office advising him to get to St. Catherine's Hospital immediately, that there appeared to be an obstruction in his esophagus.

We drove to the hospital in sheer panic and Jim felt it had to be something bad if the doctor wanted him to go directly to the emergency room. Upon our arrival the doctor was paged and he met with us within a few minutes. He explained to us that he was going to perform an endoscopic procedure to look down Jim's espophagus. Jim would be put to sleep and the doctor assured me it wouldn't take too long.

I took a seat in the emergency room area and waited and worried. What seemed like an eternity to me finally ended when I spotted Dr. Zvi looking for me. He sat down beside me and said, "I am so sorry to tell you this but your husband has a tremendous tumor in his esophagus". I sat there in total disbelief and my mind went completely blank but I do remember asking him how serious Jim's condition was. His reply was "very serious and fatal". He told me that he needed immediate surgery and this was not something I wanted taken care of at one of our local hospitals. He recommended Sloan Kettering Memorial Hospital in New York City and he offered to contact one of the top esophageal surgeons he knew there. Jim was very groggy from the procedure and as I drove home I prayed that he wouldn't wake up completely so that I would have a chance to compose myself and to stop crying. Dr. Zvi said there was no reason to worry him at this point and to simply say they found a tumor that needed to be removed. Once we arrived home and he became more alert he started asking questions but I did what Dr. Zvi suggested and downplayed the tumor. I cried silently for days and prayed he wouldn't notice how upset I had become. I never revealed to our families just how serious his condition was, I only remember expressing how scared and concerned I was about him.

It was at this point that I started scanning the internet for information. I learned about Barrett's Esophagus and GERD. I learned about the different stages of EC and quite honestly it frightened the heck out of me but it didn't stop me from reading as much as I could about this dreadful cancer.

Within a week I was in touch with Dr. Alan Turnbull at Sloan Kettering and his recommendation was that Jim needed to have another battery of tests done before we could meet with him. I needed to obtain copies of the tests that had been done from the time he was first diagnosed. He also needed a colonscopy since he had never had one. Between the both of us and numerous phone calls and appointments, we managed to get it all together and a consultation appointment with made with Dr. Turnbull.

Jim and I along with his brother and sister drove into New York City to Sloan Kettering to meet with Dr. Turnbull. After reviewing all of the results from the Cat scan, Pet Scan, the MRI test, an echo stress test and cardiogram, numerous x-rays, slides and written reports, Dr. Turnbull felt confident that he could remove the tumor and that it didn't appear to be invading other organs. He also was very impressed with the shape that Jim was in. Jim had been weight lifting for years and was extremely fit for his age( 62). I must say we never at any point questioned what Dr. Turnbull said. Because he was so experienced in performing EC surgery, we felt confident that Jim was in good hands. Jim's surgery was scheduled for August 8, 2002.. In the meantime, Jim was starting to lose weight as it was becoming more and more difficult for him to swallow anything.

August 2002

I made arrangements to stay at a hotel two blocks from Sloan Kettering. We arrived the night before the surgery and we sat outside on a bench facing our hotel. We talked about our lives together, the good and bad times, our grown children and families but most importantly, how much we loved each other. We made a promise to each other sitting on that bench that when this was over and he felt well enough, we would take time out and do some of the things we had wanted to do, but somehow never did. How many of us put things off for tomorrow and when tomorrow comes, we just don't follow through. Jim's sudden health problems certainly put a different perspective on things.

Surgery was set for 5:30 A.M. and because he was so nervous, he tossed and turned all night . When we arrived at the hospital, we were immediately taken upstairs to a pre-op area. When his name was finally called, we were escorted to a room full of patients waiting to be taken into surgery. A host of doctors came by to meet with Jim and after answering dozens of medical questions he was greeted by his anesthesiologist who explained to him that he would be administering an epidural. I looked at Jim's face and he appeared to be extremely nervous. However, when Dr. Turnbull arrived he seemed more at ease. I kissed him goodbye and told him I loved him as they wheeled him away.

Surgery was estimated to be around 7 to 8 hours. They informed me that nurses would keep me posted on Jim's progress and I could sit downstairs in the waiting area. Sloan Kettering is a marvelous hospital and every hour nurses routinely come down to update families about their loved ones. I was told the surgery was going well and there were no complications. Close to eight hours later, I was informed by one of the nurses that Jim was in the recovery room and the surgeon was waiting to speak with me.

Without my girlfriend Sue by my side, I would not have been able to retain a single word Dr. Turnbull said. There were very serious complications as the tumor was indeed larger than anticipated and had attached itself to Jim's liver, part of his lung and his spleen. He also removed his gall bladder and said at one point his blood pressure dropped so low he thought he lost him. He stated that any other surgeon would have closed him up without proceeding any further, but he was determined to get as much of the tumor out that he could see and feel. I only remember his disappointment that the tumor was so massive and that the cancer had spread to other places. He was so disappointed that none of the tests had shown the magnitude of the tumor. His prognosis was that Jim wouldn't live more than a year. Jim's tumor was 8.0 cm and the surgeon reported it was Stage IV adenocarcinoma of the esophagus. He had performed an esophagogastrectomy, splenectomy, cholecystectomy, left thoracotomy, subtotal thoracic esophagectomy and a wedge resection of the left lower lung. Eleven lymph nodes tested positive.

His main concern at that point was that Jim survive the surgery. All the optimism I had prior to this was gone in a flash. I was not prepared for this prognosis nor did I ever imagine how much our lives were going to change in the months ahead.

Jim was in the ICU unit and when I finally was able to visit with him, I was so shocked to see so many wires and tubes connected to him. According to the nurses who were assigned to him, he wouldn't use the morphine button for pain. They explained to him that it wasn't necessary to be in pain but Jim had such a high tolerance for pain, I wasn't surprised. Just the sight of him lying in the bed unable to move or talk frightened me so. But within a few days he was doing so well, that he was transferred out of ICU and was moved to a step down unit. Some of the tubes were gone and he was able to move around more freely. He no longer had the muscular body I was so accustomed to seeing – his incision went from his right shoulder blade all the way around to his back. He looked like he had been sliced in half and I could sense that he felt very self-conscious about the way his body looked. I never said a word about how serious his prognosis was because I was just plain scared to and he never asked me.

Shortly before Jim was released from Sloan, Dr. Turnbull called me to stress how important it was that Jim undergo both chemo and radiation as soon as possible and that it could be done by any local hospital in our area. I asked him if he was familiar with Stony Brook Hospital and he assured me he was and that it would be fine. I expressed how terrified I was to tell him how serious his condition was and he implied that he would talk to him about it before he was discharged. He said my main concern should be to get Jim home and well. I made some phone calls and once again, Dr. Jao came through for me. He referred me to an oncologist at Stony Brook University Hospital. It was such a relief that the oncologist, Dr. Xu agreed to see Jim as soon as possible. At his request, I faxed his medical records over to his office immediately.

From the beginning of Jim's health problems he made me promise not to worry our children or our family members . I tried very hard to keep that promise but there were times I felt so helpless and unable to think of anything but him. I never knew once we left Sloan if his surgeon had the opportunity to talk with him. I was such a coward and just couldn't get up enough courage to ask him myself.

Jim was a very funny, caring and giving person and people gravitated toward him. His personality was one that I had always envied – he loved life to the fullest – he made people feel good about themselves and he never found fault with anyone. He had recently retired and it was our plan for me to take an early retirement so we could enjoy our lives together. Jim had always dreamed of someday owning a brand new corvette. Before he was diagnosed with his tumor, he made a visit to a dealership nearby and ordered a 2003 Black Corvette with red interior. They said it would take a month or so for the car to come in. He was so thrilled that his dream was finally going to happen. I know it broke his heart when he had to call the dealership and explain his medical problem and the fact that he might not be able to pick up the car because of his upcoming surgery. They wished him well and assured him they would hold the car for him and not to worry.

September 2002

Jim is home and feeling a little bit stronger and has made arrangements to pick up the Corvette. His face glowed with happiness when he arrived home with the car and he couldn't wait to show his friends and family. Most importantly, it made me happy to see him smile again. He had gone through so much since he was first diagnosed and had become so quiet once this nightmare began that it was good to see him in better spirits.

October/November/December

We met with Dr. Richard Xu, the oncologist at Stony Brook Hospital and I liked him immediately. He was thorough and took the time to answer all of my questions regardless of whether they seemed repetitious or just plain stupid. Ironically, he was a Fellow at Sloan Kettering and knew of Jim's surgeon, so it seemed to be the right fit for us.

Dr. Xu wanted Jim to be admitted to Stony Brook for his chemo and radiation treatments, however, Jim did not want to go into the hospital. He felt very strongly that he could drive himself back and forth each day after his treatments. I was somewhat reluctant with his decision to receive his treatments as an outpatient but he insisted and I went along with his request. Treatments began and it was five weeks of chemo in the morning (5 FU and Cisplatin) and then downstairs to the radiology department. There were times when he just didn't feel well enough to drive, so I would take him or family members would offer to drive him. I must say those times were very few and I was amazed at Jim's endurance during these treatments. There were occasions when I would go with him just to touch base with the doctor about Jim's progress but for the most part, he completed his treatments on his own. Jim tolerated both chemo and radiation better than I thought – yes, there were days he was sick and living in the bathroom or too weak to get up, but overall he did very well and he never complained. If he tried to eat too much, he developed the dumping syndrome which was not pleasant and I felt so helpless as he would spend time in the bathroom throwing up. He also developed mouth sores and a loss of appetite. He shaved his head when he left Sloan and I thought he looked great considering how thin he had become. The one thing I missed the most was Jim's sense of humor. He was always making me laugh for one reason or another, as I tend to be the serious one. Once this nightmare began, I no longer witnessed any laughter. Jim became very quiet and there were times he was too tired to do anything. I was hoping that once his treatments were over, our lives would return to normal. Normal? What was I thinking? Our lives would never be the same and we both knew it.

January 2003

Jim's chemo and radiation treatments are coming to an end. He is anxious to take the corvette out for a drive and get on with his life. We are both happy that he has done so well. Jim is starting to gain some weight and he is feeling better about himself. He wanted to start lifting weights again and his doctors had no objections as long as he didn't over-due it. He takes walks with our dog during the day, is eating better and some of his humor seems to be coming back. Follow-up visits with Dr. Xu are scheduled every few weeks but so far, Jim is feeling well. Although he doesn't have the stamina he once had, I am thrilled that he has completed his treatments and we make plans to visit Las Vegas. I book our trip for May 31, 2003.

March 2003

Jim always liked to go food shopping with me – he would cover one area of the store and I the other. While I was sitting in the parking lot waiting for him (I drove straight from work) I began to think about how much our lives had changed. While I knew we were both relieved that things looked good for now, we never honestly spoke to each other about the "cancer." I was scared to death to ever discuss his condition and I was hoping he would eventually discuss it with me. However, always in the back of my mind I was tortured wondering what he was feeling and thinking. Before we entered the store, I asked him to sit in my car with me so we could talk for a few minutes. I told him we needed to be honest and open with each other regarding the rest of our lives together. At first he was very reluctant and brushed it off as if we were talking about the weather, but I persisted and within minutes he started to cry (which is something he never did) and said he didn't want to worry me, our children nor our families so he just chose not to talk about it. I told him we needed to deal with this together – not separately. We cried together which believe it or not was such a release for both of us since we hadn't been able to do that since we began this journey together. I kept telling him he was the strongest man I knew and that he would beat this. Jim was always my rock of Gibraltar and I would tell him that all the time.

Around mid-March Jim calls me at work and is complaining that he is having difficulty writing and holding things with his right hand. I call Dr. Xu and he advises me to bring him in immediately. While the doctor is examining Jim, he inquires when his numbness began and Jim replied over a week ago. I am surprised at this news because he never mentioned it to me. Dr. Xu orders a cat scan of the brain and off we go to nuclear medicine. Because this procedure is on an "emergency basis" we wait for hours because scheduled appointments are ahead of us. Finally they have Jim drink this awful looking "cocktail" and after an hour of waiting for it to travel through his body, they finally take him for the scan. We arrive home very late in the evening and go to bed since we are both exhausted. The weekend comes and goes with no news. When I returned to work on Monday I called Dr. Xu to find out if he had received the results of the cat scan. He replied he hadn't but will call me back as soon as he calls nuclear medicine. Within minutes my phone rings - Jim has a brain tumor that needs to be removed. I am numb once again………

I drive home shaking from fear but try too remain calm so Jim wouldn't see how upset I was. We drive in silence on the way to the hospital and I just hold his hand. Jim is admitted and for the next couple of days he is put through another battery of tests. We finally meet with the neurologist who had absolutely no bedside manner but I figured I didn't have to like him, I just wanted him to be a good surgeon and remove the tumor. Jim's surgery is scheduled for 9:00 A.M. the next morning and I sign a release form that explains in detail some of the side affects that might occur after surgery. I broke my promise to Jim and told family members he had a brain tumor.

Waiting for news on how Jim's surgery was going took all day and part of the evening. It appears even though he was taken into the operating room, the doctor did not start the surgery until very late in the afternoon (no one told me this) and I was on pins and needless all day long waiting to hear something. At around 7:30 P.M. the doctor calls the front desk in the waiting area and informs me that Jim's surgery is over. He has removed the tumor and he tolerated the operation very well. The doctor hung up so quickly I didn't have time to ask if I could see him in the recovery room. I had no idea where Jim was and there didn't appear to be anyone around to ask so I decided to take the elevator up to the Neurology Floor and inquire about Jim. I found a nurse and asked if my husband had been transferred to a room. She replied he was still down in the recovery room and that I should go home. They were waiting for a bed to become available and it might take hours. I drove home angry and upset because I had waiting all day, afraid to leave the hospital in case I was needed, only to be told to go home.

The next day I arrived at the hospital and found Jim sitting up in bed (after a brain tumor operation!) kidding with the nurses. I am once again amazed at how well he pulled through the surgery and so is everyone else. He is released four or five days later and he is happy to be going home. I have a list a mile long of instructions, prescriptions and phone numbers should his condition change. He has stitches on the back of his head that measure about eight or nine inches long. The good thing is that he doesn't need chemo treatment but will definitely need radiation therapy. I might add that I never saw his surgeon again after his surgery.

April 2003

There were times Jim mentioned how tight the apparatus on his head was while receiving radiation and I told him to please mention it to the technicians but he didn't like to complain. Jim appears to be more tired than usual and not really himself. I keep asking him if he is okay and he assures me that he is feeling fine. He responds that his appetite is improving and he has made plans to attend a Mets baseball game with some of his buddies, our two sons and his sister.

May 2003

Jim has been up all night with pain down his arms and in the back of his neck. His oncologist is away at a conference, so I call Dr. Jao once again and he prescribes a mild pain killer until the oncologist returns from his trip. For a day or two, the pain seems to subside but within a few days the pain becomes intolerable. He cannot sleep nor get comfortable and he is afraid. I wake up and find tears in his eyes because he has been up all night in agony. We contact his radiologist who advises him to have an immediate MRI done. He also informs us that we should not take our trip to Vegas on the following day. He doesn't specify why, he only states that he wants Jim to stay in New York and not to travel.

Unfortunately, at such late notice, we were unable to have the MRI done at Stony Brook Hospital so I called and located an Open MRI facility not far from our house. The best they could do was to schedule it at 1:30 A.M. I stayed up all night for fear of not getting up in time to drive him. We arrive at the facility and the estimated time for the test to be completed is 2-3 hours. I sat down in the waiting area and prayed he would be okay going through another test. I knew he was terribly disappointed that we weren't going to Vegas but he was in so much pain and I felt guilty that I even thought for one minute that this pain was going to go away.

We arrive home at 4:00 A.M. in the morning and the weekend comes and goes with no word about test results. He is still in a tremendous amount of pain and I feel so damn helpless. On Monday I arrive at my office and his oncologist has returned my phone call. I explain that Jim is in terrible pain and he advises me to take Jim to the emergency room right away. We spend an entire day in the emergency room having doctor after doctor evaluate Jim. He is finally given a morphine shot for the pain and I cannot put down in words how relieved he looked after the shot took effect. By late afternoon Jim is finally admitted and while this is definitely not a place we wanted to be, I felt relieved that he wouldn't have to deal with his pain any longer.

Once again a battery of new tests are ordered. Friday evening I sit holding his hand and am so grateful that he is pain free. Saturday mid-afternoon I am outside doing some yard work before I was heading up to the hospital and the phone rings. A doctor from the neurology department informs me that he has some bad news and could I get up to the hospital as soon as possible. Jim has gone into respiratory failure, and he is paralyzed from the waste down. He states that the cancer has now spread to other areas of the body and chances are he will not survive. I am frozen in fear…... I know I asked him to repeat what he said and he preferred that I meet with him in the hospital. He also needed my permission to insert a breathing tube down his throat. With trembling hands I called family members and broke the news to them. My oldest son Sean and his fiance arrived within minutes and were in tears. Jamie, my youngest son was at work and I didn't want to upset him so I made the decision to hold off until I could talk to the doctors.

When I arrived at the hospital I was shocked at the way Jim looked. A few of the doctors had been waiting for me and escorted me to a conference room. The moment had come – Jim's prognosis was not good. Did I want to keep him alive with the help of machines or was it his wish and mine to discontinue life support. I knew what Jim would want – if he couldn't have a good quality of life and needed to be kept alive by other means, he would want treatment to terminate. I clearly remember telling them to remove the breathing tube but to keep him pain free . They assured me they would follow my wishes and that he would not suffer.

June 2003

I arranged to stay overnight with Jim. The oncology nurses were wonderful and made sure he was comfortable as well as myself. A recliner which opened up into a bed was placed in Jim's room and I moved in. Days went by so fast I had a hard time remembering what day or time it was. Our families came to visit and while they were there, I would go home and shower. I was always worried when I would leave to go home, that he would expire but I always returned to see him sleeping. The nurses would continuously ask him if he was in any kind of pain and they assured me he could still hear voices. Friends, family and his co-workers would stop by to see him. I held his hand whenever I could but sometimes there were so many people in the room, I felt the need to leave. It was very emotional and stressful for me to have to watch people who loved him so much seeing him in that condition and there was never a dry eye in the room.

June 16, 2003 our son Jamie's birthday – the feeling is unanimous by the attending physicians and nurses that Jim needs to be moved to a hospice facility (for insurance purposes). I am heartbroken to have to leave the familiar surroundings that have in some small way become a comfort zone for me.

I have heard wonderful things about hospice care through the years so although I hated that we had to leave Stony Brook Hospital, I felt confident that Jim would be in good hands.

When we arrived at the hospice facility, it seemed to take forever to process his paperwork in the admitting dept. and I was becoming very upset not knowing where he was . It took every part of me to remain calm and we were finally told to take the elevators up to the third floor. It took a while to find him because the halls were empty and I couldn't find a nurses station anywhere. Down at the end of a long corridor we finally spotted a nurse and I inquired about Jim. She confirmed his room number but said we would have to wait a little while longer before we could see him. My only concern was that he continue to get his pain medication and when I expressed my concern to the nurse, she brushed it off saying he would be okay.

June 21, 2003 I arrive at Jim's bedside early in the morning, and I have him all to myself. I hold his hand and tell him how much I love him. I wasn't certain if he could still hear me but I told him I would miss his sense of humor, and his kindness. I assured him that he was a wonderful husband, father, son, brother and friend to everyone. I also told him that it was okay to go and not to worry about any of us. My sister and husband arrived in the afternoon and we all took turns holding his hand. His mother, sister and brother arrived around dinnertime and decided to attend a mass being held downstairs in the chapel. Upon their return Jim's mom says that she has prayed for him and has asked God to take him now, that he has suffered enough. Within minutes, Jim's breathing is becoming less and less. At 7:15 P.M. Jim took his last breath. I sat beside him and cried knowing this was the end. We all took turns saying our good-byes and I wanted to stay with him forever, but I knew that was not possible.

Joanne & James Cosgrove

As a footnote I would like to add that the weather in New York was at its worst. Usually by May we are getting into warmer weather and by June it is considerable hot and humid. We were having a terrible cold front and it was raining on and off for days. Most people were still wearing jackets because of the chill in the air. I left the hospital in tears with my sister and when I got into my car this tremendous bolt of lightening and thunder appeared out of nowhere. It startled us so that I was shaking and I couldn't drive my car. I sat gripping the steering wheel and tried to compose myself. I prayed that Jim would have a safe journey. He always had a spiritual manner about him and prayed every night for everyone to be happy and healthy. As quickly as the thunder and lightening appeared, within seconds it stopped and then a tremendous burst of sunlight (something we hadn't seen in weeks) peaked through the clouds. My prayers were answered –Jim had reached his journey. At least that was the way I looked at it and to this day I will never forget that moment.

Joanne Cosgrove
Long Island, NY