Sunday, October 28, 2012

Cancer and My Mother



My mother had breast cancer at the age of 70. I was 50 years old. She had her left breast and lymph nodes removed by a surgeon in Oklahoma City, who was known as "the best." He undoubtedly was, most of the time, but he wasn't for my mother. She had chosen not to have reconstructive surgery. She was a large breasted woman and chose to forego further surgery. Remember that, at the time, breast surgery was not as advanced as it is today.

I remember the moment when they wheeled her out of the room and my father and I left for the waiting room. I remember giving my mother a kiss and telling her I loved her. I was fearful that she might die and I knew that my father was terribly anxious. I do not remember her returning to her room afterwards. But she did return and the surgery was a mess. She had been mutilated and was in pain even after it had healed. He had left lumps and a jagged scar and had caused damage in the lymph nodes.
He apologized when confronted and said he would operate again at no further cost. My mother saw several doctors and was evaluated but she chose not to have further surgery. The consensus was that it could be improved aesthetically but the damage to the lymph nodes was probably permanent. She chose not to pursue any legal action even though she had been advised that she a had strong case. She suffered discomfort and pain the rest of her life.

My mother was a beautiful woman who was very talented and accomplished in many ways. She was a wonderful seamstress and made many of my clothes throughout my life, an "Arts & Crafts" aficionado, a formidable housekeeper, a very hospitable hostess, an Army wife extraordinaire! When her wounds healed, she took painting classes and discovered an amazing talent for painting.

At age 50 I could not empathize very well. As I have grown older I have come to understand what I did not understand then. I am sure that my mother was saddened by my failure to truly comfort her. I have learned one of life's great lessons, now that I am 78, that we are unable to fully understand an experience if we have not had the same experience our self! I am deeply sorry now, especially since I was an only child. I was not able to give her the loving support and empathetic understanding that she no doubt wanted and deserved.

Mother did not have another bout with cancer but she battled angry feelings until she died. And I have never resolved the feelings of guilt I had.


Rest eternal grant to her, O Lord;

And let light perpetual shine upon her.

May her soul, and the souls of all the departed,

through the mercy of God, rest in peace. Amen


Book of Common Prayer

Wednesday, October 24, 2012

Emotional States

What makes me sad?

The feeling that I have no meaningful purpose.  When people ask, "How are you?" I respond with a lie.  I say, "Fine!  I'm feeling fine!" because I know that everyone wants me to be "Fine!"  Only to my closest friends will I admit that I am not so fine.  That I am feeling depressed and sad.  The fact that I survived leukemia is a miracle and, if you are considered a miracle, you should be feeling "fine!"  

There are after effects from having chemotherapy that are long lasting, some of which, you do not recover from.  You suffer the effects for the rest of your life.  I am most troubled by my loss of memory--some of which may come back with time.  And some, I suspect, will not come back and I will have to cope with forgetting names and dates.  I am learning to cope with a giant 15 X 21 inch wall calender to record all appointments, birthdays I want to remember, and all events to which I have committed myself.  I have a black notebook in which I am writing all passwords to allow me access to my computer.  And I am trying to recall names with every trick in the book!  Four years ago I was struggling with the same problems as a result of a mild  stroke.  I have always loved to read and have been considered as a reasonably intelligent person who pursued knowledge by studying.  To lose the ability to do so would be a great loss and I fear losing it.

Everything I do, I do slowly.  Not on purpose.  It just seems to take a long time to do anything.  And I tire easily.  Usually requiring an afternoon nap.  Cooking for myself is no longer pleasant.  It is just a necessity.  

Transportation is a problem because I can only drive short distances and never at night.  All my children are scattered, living in four states, which adds to the complexity.  

I feel that God has granted me with a few extra years of life and that I am expected to do something.  I don't know what that something is.  

On top of it all, when I mention how I really feel (useless) I am ashamed because, anyway that I state the above, it sounds like whining and I feel ashamed of myself.  

After all, I am the recipient of a miracle and those who receive a miracle should be ecstatically happy!  

Heavenly Father, watch over your daughter, and grant that she may be restored to that perfect health which it is yours alone to give; through Jesus Christ our Lord.  Amen
                                                                                                       Book of Common Prayer 

Saturday, September 22, 2012

Meeting With my PCP

I had an appointment with my primary care physician, Dr. Tushar Patel, this morning.  It was the first time since February, when he had called to tell me that in all likelihood I had leukemia and that I was being referred to Tufts Medical Center for treatment.  He appeared to be very glad to see me and gave me a big hug which really surprised me!  He was accompanied by a man whom he introduced as an intern.  And he expressed amazement at how well I am doing.  He has received a copy of all my medical records from Tufts.  He gave the intern a synopsis of my medical history in which he said that I had come to see him and reported that I was unusually tired.  He had ordered blood work and it revealed leukemia.  He talked about unusually high "blasts," making it sound like a major battle was being fought!  There was...my body fighting for life.  Dr. Patel startled me by saying that he did not think I would live.  I was expected to die in a few days.  I was engaged in a battle where 80% of the enemy were aligned against me.  I was over come by the overwhelming feeling of being a "miracle!"

We reviewed my medication and he added two--baby aspirin and oxibutynin--and eliminated pantoprazole which had been prescribed for the heartburn I experienced in the hospital.  A side effect of it could be part of my problem with incontinence.  He scheduled my next appointment for January 2013. 

When I saw Karen on her recent trip back, and asked her about her crying so profusely after driving me to Tufts she simply said "I thought that I would never see you again!" 

My friends all think that my recovery is a miracle, as do I!  A miracle performed by others.  The Staff at Tufts Medical Center, especially the 8th floor personnel who were compassionate and caring, in addition to being highly trained and professional; the members of St. John's Episcopal Church who prayed for me; and my friends who also prayed for me.  My children who prayed for me and came to care for me; and a myriad of people I have never met who are members of prayer groups prayed for me!  My imagination sees them all storming heaven and not taking no for an answer!  In my imagination     "those I love but see no longer" my parents, my first child, my grandmother Nanny, Rusty and Bubu who cared for me when my mother went to be with Daddy in WW2, other family members and Mike, a very beloved dog; all standing firm in their prayers of well-being for me. 

I inherited a love of dictionaries and language from my father.  As a result I own several dictionaries which are kept at my computer desk, all ready to enlighten me.  My favorite is a paperback copy of The Oxford English Dictionary (containing 90,000 words, phrases, and definitions).  

In it a miracle is defined as a welcome event that is so extraordinary that it is thought to be the work of God or a saint.

My recovery from leukemia is certainly a welcome event!  And it was, and is, very extraordinary!  So extraordinary that only a higher power could have brought it about.  In 2012 an estimated 23,540 men and women will die of leukemia.  


Following is a prayer taken from "Soul Weaving--A Gathering of Women's Prayers," edited by Kyn Klug, 1996.  The prayer is written by Jo Carr and Imogene Sorley. It expresses so poignantly what I feel. How do I make a difference?

Why me, Lord?
Right in the middle of a strange, mixed-up world.
And with this nagging awareness within me
that you want me
to do something
or say something
or be something
that will make a difference.
It may not change the course of history--
but it may change the course of some life.
And I am obligated to respond to your call.
Why me, Lord?
I don't know why.  
I only know the unrest,
the divine discontent,
the eagerness on one had to charge off in service for you,
and the agony on the other of not knowing in what direction.
Why me, Lord?
And what, what would you have me do?

I accept the honor of being a miracle and want to thank all those who cared for me, my children and my friends and to all those, known and unknown, who prayed for me.  


Monday, September 3, 2012

The Color Purple

I have fallen in love with the color purple!  Purple has not been a common color.  Until recently not very many things were made in the color purple.  I was 77 years old and had never bought anything purple.  I didn't dislike purple, it never seemed to come to my attention.  Now, it is everywhere.  At least, in New England, it is "the" most popular color this season.  

It has invaded even the men's department.  I am watching TV and a man is wearing a beautiful purple tie.  Purple and lavender shirts are also very popular.  In all department stores purple is available.  

Since falling in love with the color I have googled purple.

The Purple Heart is awarded to all military personnel who are wounded in action.  The award represents courage.  My father was awarded the medal when shrapnel exploded in his helmet in Italy after the Anzio Beachhead. 

My granddaughter, Elizabeth Aileen, also received a Purple Heart in Iraq.  The truck in which she was riding shotgun, hit an IED and rolled over several times, landing upside down.  The woman who was driving the truck was killed.  Elizabeth walks with a brace on her leg and a cane and still struggles with PTSD.  When the doctors decide that she is old enough for a knee replacement, they will operate and she will be able to walk without discomfort.  She is now expecting her first child and as her weight increases, the pain increases.

Monday, August 27, 2012

Survivor's Guilt

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.



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.

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.