"The story of the care and concern that was shown by the staff and doctors at MGH [Massachusetts General Hospital] for Susan is a story... that reflects on an entire attitude of care at the Cancer Center that sustained and nourished us throughout a very difficult time."
The following letter written by Donald Fisher, a professor of mechanical and industrial engineering at the University of Massachusetts (Amherst, Massachusetts, USA), shares his positive experience with the health care system during his wife's treatment for bone cancer at the Massachusetts General Hospital Cancer Center.
February 28, 2002
Dr. Bruce A. Chabner
Clinical Director, MGH Cancer Center and Division Chief, Hematology/Oncology
100 Blossom Street COX 640
Boston, MA 02114-2617
Dear Dr. Chabner:
My wife, Susan Duffy, was diagnosed with a fibrosarcoma of bone back in May of 2000. She has been treated at MGH from the start, using a combination of surgery, chemotherapy and radiation, until she recently passed away on February 14, 2002. I am including a picture of Susan and the kids in happier times. I am still awestruck by her capacity to live life to the fullest each day, making the last two years, which could have been truly unbearable, ones suffused instead with the joy which her presence always evoked, in me, her children and the many others whose lives she touched. I am convinced that part of that courage came from the knowledge that she was in good and loving hands wherever we turned for help.
Naturally, it is a time of great sadness for me. But, it is also a time of extraordinary gratitude. I am slowly contacting all of the various individuals who have had a role in her treatment at MGH. However, the story of the care and concern that was shown by the staff and doctors at MGH for Susan is a story about more than just the individual pieces. It is a story that reflects on an entire attitude of care at the Cancer Center that sustained and nourished us throughout a very difficult time. I want to let you know just how grateful we are to the staff and physicians, at every level of care, who have given of their time to Susan and me. And I know of no better way to do that than relate to you just some of the many, many instances where they stepped in when we were so adrift.
Susan had a positive bone scan on the Thursday before Memorial Day weekend in May of 2000, indicating a mass on her distal femur. The bone scan was read by physicians at our local hospital, Cooley Dickinson, here in Northampton. My brother is being treated at MGH for a malignant thymoma and contacted Dr. James McIntyre. Dr. McIntyre immediately phoned me and made time for my wife and me the very next day. Instead of our having to wait weeks to get into the system, we were there in literally hours.
Dr. Kattapuram did the initial biopsy of the mass on the distal femur. It came back positive and Dr. Harmon and Dr. Hornicek informed us of the results. The news was devastating, but they made sure from the very start that we knew that there did exist treatments and that they would take good care of us. At that time, Dr. Hornicek also introduced me to Anne Fiore, a nurse practitioner in orthopedic oncology. Anne was extraordinary throughout. One story in particular comes to mind. Susan was hospitalized several times, not only for the initial resection and replacement of her distal femur, but subsequently for pain management and, ultimately, a commissural myelotomy. Because we came from such a distance and because Susan could often be in so much pain, it was critical that everything be coordinated if possible for a single visit to MGH, including the many scans to determine whether the disease had progressed. I remember one time that Anne herself walked to the areas where the CT scan and MRI were done to make sure that the attendants there knew in exactly what position Susan had to be in order to keep from being in pain and to make sure that the anesthesiologist was aware of the medications that Susan would need before and after her scans. Anne never left the slightest stone unturned. I knew that Susan was in the very best of hands. And, both the Visiting Nurses Association and Hospice who helped us at home were truly amazed by Anne's ability to deal quickly and compassionately with all of the management issues involved in Susan's care from such a distance.
While Susan was in the hospital, we got to know Dr. Harmon very well. He would visit Susan every day she was up on Ellison 14 for inpatient chemotherapy or when she was down on Bigelow 12 for outpatient chemotherapy. And he would visit when she was admitted by Dr. Hornicek for related problems. Susan was on White 6 at the time of the particular story that I want to relate, visiting with her mother. I was not in the room. Dr. Harmon had talked with Susan and her mother, saying to her mother just what a beautiful daughter she had raised. I was not aware all of this was going on and was far away in a different part of the building making a call. After leaving Susan and her mom, the doctor headed out to his office. On his way to his office, he just happened to come across me. I was still on the phone, but wanted to say hello to him. So, I raised my eyebrows ever so slightly as he went by. Without hesitating at all, he stopped, and waited for me to end my call, which I did quickly. He then asked me how things were going. Well, things really weren't going all that well. I got more and more sad. And then I said, I need a hug. Without skipping a beat he came over and gave me a big hug. Hugs and tenderness could not save Susan, but they did save the kids and me, again and again and again. And this tenderness was present in everyone across whom we came, from the dieticians to the wound care specialists, from the nursing station attendants to the ambassadors at the front door of MGH, from the physical therapists to the many personnel helping with the CT scans, PET scans and MRIs, from the people at Beacon House and MGH at the Y to the staff in the Cancer Resource Room, and from the parking garage attendants to the doctors and nurses and personal care assistants. The list seems almost endless.
I want to relate another story while Susan was in the hospital. One day while up on Ellison 14, Susan received a visit from Father Mike McElhinny. Susan is not a practicing Catholic, but that made absolutely no difference to Father McElhinny (or so I hope). She derived from Father McElhinny a joy and comfort that is simply indescribable. But, I must relate to you a more personal story. I was always amazed while walking the halls of MGH that no one appeared to be in tears. Certainly scenarios like the one that was unfolding for us must have been unfolding for others. Yet, everyone seemed to contain their grief so well. One day in the fall of 2001 Susan was over getting a PET scan. There was some concern that the disease in her distal femur had spread to her sacrum and perhaps to her lungs. I was standing in front of the gift shop right beside the Ellison elevators. And then I broke down, not hysterically, but quietly sobbing. I knew that Susan had liked Father McElhinny and had found special comfort in him. I had never met him before, but decided at that moment that I would like to see him. So, in a voice choked with tears I called the oncology chaplain's office. Gina Murray, the woman who answered my call, was so very kind. She said that she would beep Father McElhinny, and gently told me to stay put. He quickly found me outside the gift shop. Together we walked to his office upstairs and he helped comfort me with words which to this day still bring me solace.
Finally, as we approached the end of this year, it was clear that Susan did not have long to live unless by some miracle one of the new chemotherapy regimens happened to work. I had dreaded this moment from the very start. I was not sure how well I would deal with being told that nothing more could be done for us and that we were being sent home to die. My fears were fueled in part by an episode that Susan had witnessed while up on Ellison 14 back in the fall of 2000. She was in a double room, next to a woman who was obviously in failing health. A doctor smartly walked up to this patient in the next bed, the heels of his loafers announcing his business like arrival. He said he was sorry that they could not do anything else for her, and quickly exited. I do not know the doctor nor do I know the circumstances. But that was the scenario which played out in my mind many times over.
Perhaps I should have talked with our physicians sooner, but that certainly did not happen to us. Both Dr. Harmon and Dr. Rauch were there for us until the very end. As a spouse of someone with cancer who has now passed away, I cannot tell you how much that hope meant. Susan and I were both realists. We knew the odds were very, very slim. We traveled through storms and icy weather, sometimes being the only ones on a snowy day actually to make it to her radiation treatments. And we came from 90 miles away! But despite the odds, we wanted to live life to the fullest as long as possible. And that meant having some hope, no matter how tiny that hope was, held out for us to grasp. Three days before my wife passed away, she looked up at me through a fog that had set in and asked whether the doctors and nurses had given up hope. I said no, not yet. She said she loved me and smiled. There is no greater gift that your team of caregivers could have given to her or that she could have given to her family. That hope allowed her to be present for her children and friends in ways that otherwise would not have been possible had she focused on what obviously lay so close and tragically at hand.
I would like to relate just two other stories that occurred while we were actually at the hospital. For the last six months of her life, Susan could be in only one position, basically her right side. We received treatment throughout that six months and needed to travel from Amherst (our home) to Boston. Ambulance workers in Amherst helped transport Susan by stretcher from her bed to a mattress that we had placed in the back of a minivan we bought to transport her. When we arrived at MGH, the lot at the front of the main entrance was often crowded with people and ambulances. Yet no matter how busy, the ambassadors were always there to help us the minute we arrived. They would ever so gently transfer Susan from the back of our van to a stretcher and then up to Bigelow 12 where she was receiving outpatient chemotherapy. And then, after she was done treatment, they would help move her from the stretcher back into the van, just as carefully and just as gently.
The last story I want to relate about our experiences while at the hospital shows, as does the above, just how broadly the attitude of caring spreads throughout all of MGH. I was with Susan by her bedside in White 6 in August of 2001. This was the first time that she had been in considerable pain and I did not want to leave her, but I needed to pick up my room key because I was staying overnight at Beacon House, a group of apartments just a short walk away from MGH reserved for patients and families. The building attendant leaves after 11:00 p.m. I called Sharon Scott at Beacon House to find out if it was OK if I arrived later than planned. I explained my situation. Out of a goodness of heart which speaks for itself, Sharon said that she would bring the key over to me in White 6 and that I need not worry about leaving Susan. I breathed a sign of relief and ever so gratefully accepted her offer.
The concern for our care did not stop at the doors to MGH. What was truly extraordinary was how everyone there made themselves available to us whenever we needed help, often within minutes of my calling from Amherst. While on chemotherapy, Susan had to be raced to a local hospital a number of times, including once when she had neutropenia and once when she was bleeding internally because of her low platelet count. I could always count on Dr. Harmon to return my calls, often it seemed before I had hung up the phone. I cannot tell you how much it meant to me to know that I was in such direct contact with our physician when he was needed. Later, when Susan was in such pain, I would call Annabel Edwards in the Pain Center to learn what we could do, if anything, to decrease her considerable discomfort. I was often in tears at this point. Seeing my wife in pain was the most difficult part of the entire process. Annabel would be back in touch within minutes and she would assure me that we could change the medications. And perhaps more importantly, she would offer words of comfort that would help get me through the next hours and days so that we could return to living life again more fully.
Not only did the care not stop at the doors of MGH, but the staff and physicians reached out to us in the most unexpected and beautiful ways. Perhaps my first memory of this was the contact I had with Dr. Kattapuram when I was trying to schedule with her a biopsy of a mass that had appeared on Susan's sacrum. I called the doctor and simply made sure that I had the correct schedule. She said yes, and I expected her to end the call. We had completed the business at hand. But she did not end the call and proceeded to ask me how Susan was doing. I don't know how she managed to convey so well her very real concern for Susan's well being, but it came through loud and clearly. And then, I will never forget an email from Dr. Hornicek at one point in the spring of 2001 when we learned that the disease had spread from the distal femur to the sacrum and that radiation treatment had failed to stop the growth. The email arrived without my having contacted him for some time since there was no need to do such. But obviously he was keeping track of how things were going with us. He wrote:
"How is Susan doing?
Let me know how (we) can help you
through these difficult times.
Fran Hornicek "
I cannot put into words just how much it meant to know that someone was looking over our shoulder, letting us know that they cared as things continued to worsen for my wife.
The nurses and doctors continued to reach out to us over the ensuing months. Some time later, in December of 2001, Susan was again up on White 6 for the management of her pain. It had been a difficult time and Barbara Levin, a nurse on that floor, had helped us through the trial of an epidural catheter and ultimately a commissurotomy. Susan arrived in the hospital on December 1 and left on December 23. Barbara was on duty Christmas day and actually called our home to wish Susan and the family a happy holiday and to see how Susan was doing. Her thoughtfulness will forever be remembered. Then, several weeks later we received a call from Vicki Cotton, an oncology social worker. Two of the nurses who had helped with Susan's chemotherapy treatment, Esther Odette and Karen Ward, had called Vicki Cotton to ask her to make sure that we were receiving the support at home that we needed to keep Susan comfortable! To find that the nurses who were taking care of Susan at MGH would actually contact our social worker out of concern for Susan's well being at home was again a gift of kindness that will be forever be remembered.
I am leaving out many, many other stories, stories equally poignant for us and equally illustrative of the care and compassion that pervades the entire Cancer Center. Susan had only one wish at her death, that we thank the family, friends and caregivers that had been such a help to us over the last two years. Thank you all.
Sincerely,
Donald L. Fisher
