Shortly after I was released from Tufts Medical Center I began attending church again at St. John's Episcopal Church. Everyone welcomed me and was very solicitous of my well being.
The daughter of a long time acquaintance of mine was diagnosed with leukemia. Cindy, the mother of two sons, was in her late forties. She had surgery twice. They removed all that they could remove. But she did not recover. She was treated at Massachusetts General Hospital. One of the best in the nation.
Her mother, Shirley, is a life-long member of St. John's Episcopal Church. Her daughter converted at marriage to the Roman Catholic Church where her husband was a member. The wake for Cindy was held at a Tyngsboro funeral home. I went with Betty, a close friend of mine, who is also a member of St. John's. It was the largest wake and funeral either of us had ever seen. At least a thousand people attended the wake. It took an hour of standing in line to reach the receiving party! Receiving were the husband and two sons, the husband's older brother and his wife, my friend Shirley and her husband, and the parents of Cindy's husband. When we reached the head of the receiving line, Beverly, Shirley's sister, stepped forward and escorted us through the line, introducing all the members to us. I was presented as a recent leukemia survivor by Beverly, who has survived breast cancer. It was a very gracious thing to do and relieved my anxiety about making an appropriate comment. Shirley told me afterward that the receiving line was five hours long!
My heart ached for Shirley. The loss of a child is especially poignant. Children are not supposed to predecease us. She had a very close relationship with her daughter and had taken care of her during her illness because Cindy's husband was a policeman in Tyngsboro and needed to be on duty as often as possible. The funeral home was beautifully decorated with photo collages of Cindy's life and flower arrangements given by friends and relatives. Policemen were there in force.
When Betty and I left the funeral home we decided to drive to the church since we were uncertain how to get there and the funeral was scheduled to begin at 9:00 a.m. It's a good thing we did because it is a very circuitous route. The church was lovely, sitting in a wooded area, alone. The next morning we arrived early and chose to sit in a row close to the area reserved for the family. It was an extraordinarily large area. Shirley has three sisters and several brothers and many cousins. The church seated 400 people and every seat was occupied. The service was lovely, very personal, and the crowd was very well managed. The eulogy was given by the husband's older brother and it was very well done. The husband stood to thank him and started crying in the middle of it. The older son had written a poem for his mother and the priest read it. Nearly everyone was weeping at the end.
What was I feeling? Guilt. If I were God and could arrange it, it would make more sense to me, for me to have died and Cindy to recover. I am 78. No one would be shocked at reading my obituary in the paper. It makes no sense. I do not know the plan for the universe. I do not know why a young woman who has cancer does not survive and I do not know why a 78 year old woman does survive. I am extremely grateful to have survived and I hope that my survival will result in some good. But I am very saddened by Cindy's death. And I am very sorry for Shirley's loss.
Monday, August 27, 2012
Saturday, August 25, 2012
The Study Group
My course of treatment has been set. The computer has randomly selected my name as part of the control group. I will be monitored every month for a year. Twelve more visits to Tufts. I am relieved but not entirely. There will be more bone marrow biopsies! I have had four and do not look forward to
having any more. Cheryl, my daughter, was with me during the last one and thought I had seen the needle. I hadn't. Not knowing that, she was so shocked she spontaneously exclaimed, "That's a wicked, evil-looking needle!" It is not the needle, no matter how it looks, that is the problem.
having any more. Cheryl, my daughter, was with me during the last one and thought I had seen the needle. I hadn't. Not knowing that, she was so shocked she spontaneously exclaimed, "That's a wicked, evil-looking needle!" It is not the needle, no matter how it looks, that is the problem.
First Day in the Study Group
Tomorrow I am making my first visit to Tufts Medical Center for my first visit as a part of the computer random selection which chose my name as a member of the control group. The other group will continue with three days of chemotherapy which will require them to make three visits to Tufts every month.
It is also my first visit without one of my children accompanying me. Driving me wherever I wanted to go. I have begun driving locally, short distances to the grocery store, my bank, a small shopping mall, the only gas station in town that pumps gas. They are all a short distance from my home and can be accessed by lightly traveled back roads.
I must drive carefully and with intention, paying close attention to the possibility of an accident or taking a wrong turn and losing my way, or forgetting the way! The greatest challenge being to choose the right road that will take me where I want to go. There are three main highways that intersect in Lowell. Route 3, Route 93 and Route 495. All three are routes that I have traveled many times. Going north on route 3 goes to New Hampshire and the shopping area in Nashua, NH, Route 93 goes north to New Hampshire and the airport in Manchester, and Route 495 goes to Salisbury Beach in MA, Hampton Beach in NH and continues along the coast to the bridge that crosses into Kittery, ME. The first half of the bridge is in Massachusetts and the second half is in Maine! It spans an inlet of the Atlantic Ocean! I have driven to Kittery many times to enjoy shopping at the outlet stores and to enjoy a seafood dinner at the Weathervane.
Dean, Dawn, Kady and I decided to go there, looking forward to a seafood dinner and visiting our favorite stores for bargains. Dean was driving and, after some initial confusion about which way to go, asked if we should follow River Road to Route 93. I said, "Yes!" We passed several known sites to me, including the turn off to the airport, and I had a nagging feeling that we weren't on the right road. Dawn checked us out on her cell phone and announced that we were headed for Canada and needed to turn right in order to reach Kittery. I felt that it was my mistake (it was!) and apologized. But my apology didn't soothe the agitation that I felt about choosing the wrong highway and not recognizing my mistake. And driving back late that afternoon
I felt hurt and angry because no one paid attention to my directions which was totally irrational. I kept thinking that I have lived in this area for thirty years and have made this drive numerous times. How could I have made such an egregious mistake?
I have had several experiences of forgetting directions on how I should go. I have learned that I have to think the route through to the end. If I feel confused or in a hurry, I am very unlikely to remember the way to go.
Since Tufts is in Boston, getting there is the problem. The Lowell area does not have any drivers who volunteer their services to cancer patients. Most people that I know are employed full-time and not free to offer their services.
I am 78 and my friends, who are close in age to me, no longer drive in to Boston. I planned to take the risk of driving myself but my son thought it was very risky, a hazard to me and a hazard to other drivers on the road. I decided to take the train which ends at North Station in Boston and take a taxi to Tufts.
As the time grew near I became more and more anxious about going on the train. I had made the trip only once with Cheryl. By Sunday, my appointment was on Monday, I was overwhelmed by anxiety and called a limousine service.
It was the most expensive way to go but I was certain of arriving (barring an accident).
I arrived for my appointment on time to have an EKG and have the Lab Work done. Then I saw the new intern and finally, Dr. Sprague. I discussed the memory problems I am having and she assured me that they were common and will get better with time. She talked about the possibility of relapse and said that if everything continued to go well that relapse is highly unlikely after 5 years. In five years I will be 83! By that age my mother was in a nursing home! But perhaps I will be blessed with a few more years.
It is also my first visit without one of my children accompanying me. Driving me wherever I wanted to go. I have begun driving locally, short distances to the grocery store, my bank, a small shopping mall, the only gas station in town that pumps gas. They are all a short distance from my home and can be accessed by lightly traveled back roads.
I must drive carefully and with intention, paying close attention to the possibility of an accident or taking a wrong turn and losing my way, or forgetting the way! The greatest challenge being to choose the right road that will take me where I want to go. There are three main highways that intersect in Lowell. Route 3, Route 93 and Route 495. All three are routes that I have traveled many times. Going north on route 3 goes to New Hampshire and the shopping area in Nashua, NH, Route 93 goes north to New Hampshire and the airport in Manchester, and Route 495 goes to Salisbury Beach in MA, Hampton Beach in NH and continues along the coast to the bridge that crosses into Kittery, ME. The first half of the bridge is in Massachusetts and the second half is in Maine! It spans an inlet of the Atlantic Ocean! I have driven to Kittery many times to enjoy shopping at the outlet stores and to enjoy a seafood dinner at the Weathervane.
Dean, Dawn, Kady and I decided to go there, looking forward to a seafood dinner and visiting our favorite stores for bargains. Dean was driving and, after some initial confusion about which way to go, asked if we should follow River Road to Route 93. I said, "Yes!" We passed several known sites to me, including the turn off to the airport, and I had a nagging feeling that we weren't on the right road. Dawn checked us out on her cell phone and announced that we were headed for Canada and needed to turn right in order to reach Kittery. I felt that it was my mistake (it was!) and apologized. But my apology didn't soothe the agitation that I felt about choosing the wrong highway and not recognizing my mistake. And driving back late that afternoon
I felt hurt and angry because no one paid attention to my directions which was totally irrational. I kept thinking that I have lived in this area for thirty years and have made this drive numerous times. How could I have made such an egregious mistake?
I have had several experiences of forgetting directions on how I should go. I have learned that I have to think the route through to the end. If I feel confused or in a hurry, I am very unlikely to remember the way to go.
Since Tufts is in Boston, getting there is the problem. The Lowell area does not have any drivers who volunteer their services to cancer patients. Most people that I know are employed full-time and not free to offer their services.
I am 78 and my friends, who are close in age to me, no longer drive in to Boston. I planned to take the risk of driving myself but my son thought it was very risky, a hazard to me and a hazard to other drivers on the road. I decided to take the train which ends at North Station in Boston and take a taxi to Tufts.
As the time grew near I became more and more anxious about going on the train. I had made the trip only once with Cheryl. By Sunday, my appointment was on Monday, I was overwhelmed by anxiety and called a limousine service.
It was the most expensive way to go but I was certain of arriving (barring an accident).
I arrived for my appointment on time to have an EKG and have the Lab Work done. Then I saw the new intern and finally, Dr. Sprague. I discussed the memory problems I am having and she assured me that they were common and will get better with time. She talked about the possibility of relapse and said that if everything continued to go well that relapse is highly unlikely after 5 years. In five years I will be 83! By that age my mother was in a nursing home! But perhaps I will be blessed with a few more years.
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