A Blood Transfusion

In 2000, 245,000 adults and children in the US were affected with some form of leukemia. Our population is growing older and living longer lives and I am part of a study on how to effectively treat the elderly population.


I had my third appointment with Dr. Sprague and Dr. Chakra yesterday since having the second consolidation. I was anemic and required a transfusion. I was very surprised to learn that it was not my first transfusion. I had two during my first hospitalization. I do not recall too much of what happened during my initial hospitalization--it remains a blur! I was relieved that Dr. Sprague wanted to see me only once the following week.  They are hoping to do the bone marrow biopsy and pop my name in the computer for random selection.


Cheryl went to find some lunch for us and I went to wait in the infusion waiting room, hoping that it wouldn't be a long wait. It was less than an hour when I was called in. The woman who hooked me up to the platelets on Thursday, hooked me up to the blood and explained that it would take at least one hour. 


I would not describe myself as a squeamish person, but I was "freaked out" by the blood! And I kept wondering whose blood it was that was now slowly dripping into my veins. Was it a man's? Or a woman's? What were they like? All the vampire movies I have seen (not many!) were haunting me! I was very relieved when I was able to leave.  

Barnett and Betsy

In the military you develop friendships in an unusual way. When we were assigned to a new post there were new people to meet. A commanding officer with a staff assigned as he saw fit. There were no women on duty then. We were invited to all social functions and became well acquainted with our fellow officers and their wives. 
We did not always like all the members of our group but we were acculturated to always maintain a civil attitude and we always found those couples with whom we had a lot in common and genuinely liked!


We were stationed in Bamberg, Germany in 1970. My husband was a battalion commander and a Col. Barnett DeRamus was post commander. He was married to a charming woman named Betsy and they had four children. We had so many good times with them. They were both from the South and Barnett was the epitome of a Southern gentleman. He was very tall with white hair and was very good looking. His favorite person to quote was the Duc Francois de La Rochefoucauld who wrote short pithy sayings. Betsy was very lively and a fun companion. They both spoke Italian having learned the language during an assignment there. They entertained often.


During a training exercise in Grafenwohr when both husbands were gone, Betsy decided to go to Lake La Garda in Italy. She invited me to go along and I was delighted. We rented a small pension near the lake. We drove to La Garda but I don't remember how we got there with all eight children! I do remember the bright green bikini I bought--my first!--for the trip! We spent our days on the beach, feasted on wonderful Italian food, and experienced "la dolce vita."


There was a very famous opera in Verona and they were presenting Aida by Verde. We went for the day and enjoyed the sights, especially reveling in the attention we received from everyone because of our eight children! The "Arena di Verona" was a magnificent coliseum and we settled ourselves on the steps. It was a breath-taking performance  and one of my favorite memories. The children were good and fell asleep on the steps!


We returned to Germany with unforgettable memories. They have dimmed with time but they still give me pleasure to remember them. With the pleasure there is pain.  Shortly thereafter Chuck was reassigned to Kelly Barracks in Stuttgart, Germany. Which meant, making new friends. Which we did. We exchanged Christmas cards with the DeRamus's and caught up with the news at least once a year.  


Several years later (at least twenty), after I had moved into my condo, I received a lovely long letter from Barnett. It was full of news of the children and Betsy and that he was dying of cancer. He ended by hoping for news from us and he made a final request that I might write to him. I am ashamed to say that I never did. I intended to but my words went without saying. Betsy wrote a letter when he died. Now that I have leukemia and have contemplated my own death, I am saddened by my lack of response and wish I could say I'm sorry. How often have I ignored my  good intentions?


Rest eternal grant to him, O Lord;
And let light perpetual shine upon him.
May his soul, and the souls of all the departed,
through the mercy of God, rest in peace. Amen


Book of Common Prayer

Infusion

The car had a flat on Sunday just as we pulled out to go to church. So on Monday we had to go into Tufts using commuter rail. The train leaves every hour at 15 minutes past the hour. It takes you into North Station in Boston. We caught the 9:15 train. As you exit the train station, to your right a few feet is the entrance to the "T", Boston's subway system. The Orange Line takes you to a stop that is directly underneath Tufts Medical Center!


We did all of the above and arrived at the Lab at 10:45 a.m. Three people were in front of me, and ordinarily it didn't take too long. But this particular morning it was taking an extraordinarily long time. I went to check on my status and was told that they had had several emergencies. They would see me as soon as possible. I thanked them and tried to hide my frustration. You don't want to irritate the nurse who is shortly going to stick a needle in your chest!


My name was called next and my blood was sent to a doctor to determine if I needed an infusion. I needed an infusion of platelets. Mine were very low. Dr. Chakra (the assistant to my doctor, Dr. Sprague) came around to reassure me that I  would be out of there by 2 o'clock.


I sent Cheryl to get some lunch for us and I went to the infusion lounge to wait. There were no chairs available for new patients. At 2 pm I was called in
but had to wait again for a nurse to be available. I was feeling very tired and slept through most of the infusion. I was released and we headed for North Station around 3:30 pm and got home around 5:30 pm, quite a bit worse for the wear!
I was exhausted! 


Cheryl went to get the car while I waited one last time. The waiting room was cool but not enough to trigger what happened to me next. I took a chill and started shaking. No one else seemed to be bothered but I was freezing! I continued to shake uncontrollably until we arrived at home and after and Cheryl covered me with a blanket. I ate half a sandwich and went to bed. I don't think I moved all night! Nor did I wake up!

Lethargy

I have been very lethargic today.  I am waking with the birds literally and spent some time rearranging my closet. I was not tired since I went to bed at 8:00 pm.  And I enjoyed a good night's sleep. My mind racing seems to have abated and I am able to relax.

My friend Julie came for a visit at 10:30 a.m. Julie and Bella! Bella is a MinPin, a "Miniature Pincher" that she rescued from the pound. He is devoted to Julie and Julie to him. Julie has been a friend for almost forty years. We met when we were in college and had a class together.  It was the first of several classes that we shared. We both lived at Fort Devens where our husbands were serving in the military. Her husband was a dentist. My husband was an artillery man. We stayed in college and earned master's degrees. Then we braved the real world and got jobs. She was a social worker and I was an addiction's counselor. We remained friends. She had four children and I had four children. We have supported each other through a life cycle of events! And are still good friends.

I'm looking forward to tomorrow. A day free of commitments.  I am tempted to stay home on Sunday too. It is Father's Day--more of a Hallmark Holiday than a religious observance. I am tired of having to keep appointments and not being in control of my life. And I am ashamed of complaining. Shirley French's daughter has been very ill with a cancer that has not responded to treatment. Her prognosis  is very poor. Her daughter has two children, ages 20 and 18, and is actively sick. Shirley is so solicitous of my well being. I am 78 and have had a good life. I have nothing to complain of--even being out of control of my life.

In the Heart of Chinatown

In downtown Boston, in the heart of Chinatown and the Theater District, stands the oldest hospital in the United States. Founded in 1796, and called the Boston Dispensary, the people of Boston funded tickets that enabled the poor to receive services.  One of the original tickets was signed by Paul Revere and is on display at the Massachusetts Historical Society!


Tufts Medical Center faces the "Floating Children's Hospital." A hospital designed after an actual ship that was used for the children from 1894 to 1927.  On July 25th, 1894 a boat became an innovative hospital for poor children. Little was known about treatment but many believed that the cool winds of sea air promoted good health. Reverend Rufus B. Tobey advocated taking sick babies for the therapeutic effects of a day on Boston Harbor. The Boston Herald promoted the idea and donations poured in. The Boston  Floating Hospital was born.  For 33 years the babies and their mothers received care! in 1906 a 170 foot ship was buiilt in Boston and in the 1920's they established a facility for research. In 1931 the Jackson Memorial Building opened.


The streets are alive with the hustle and bustle of people all going in different directions, hurrying to their destination. The Chinese people who live there are fascinating to someone who has never known a great deal about the Chinese. They are small and delicate although some of the younger members have grown tall. The young women are lovely, slender as reeds and hurry by with young men. The children are adorable with alert looking eyes. I sit, perched on the foundation of the building, waiting for my ride and I happily watch the surrounding scene.  The traffic is heavy and pedestrians scurry along the street and to cross the street. There are double buses that run and three lanes of traffic--all in a hurry.


It has been a good day. I did not have to have an infusion to boost my white blood count and my fainting episode was simply checked out and documented.   
I was free to go! 


The older Chinese women are the most interesting. They are very attractive and those who appear to be married, are married to men as short as they are. They are well dressed. Neat and tidy and for the most part in American dress.  


From the confusion of the street rise two buildings, one a children's medical facility and across from it, rising 8 floors, is Tuft's Medical Center where I am a patient.  It is becoming a sort of home away from home. I am acquainted with some of the staff, including my doctors. It is a lot like the street. A lot of people are coming and going


I feel proud of being a patient at Tuft's. I am pleased to be part of a teaching hospital. I consider myself to be very fortunate to have been referred here!

First Consolidation

I was hospitalized for my first consolidation after the trip to Carlisle for Dean's retirement. Cheryl returned from a trip to Arizona on the 3rd of May and drove me to Tufts. "Consolidation" is a six day period of chemotherapy that is less intense than the first time. Cheryl awoke on the 4th running a fever and couldn't come see me. She went to the emergency room and was diagnosed as having a sinus infection. The rooms on the oncology ward are kept as sterile as possible. All visitors and staff wear robes and plastic gloves to protect the patient from infection. 


Cheryl did not recover until the end of the week and returned to pick me up. You are released from the hospital as soon as your last chemotherapy is given. There is a higher incidence of infection occurring in a hospital than in your own home.  


Since I had no visitors that week it became retreat time and I had brought a book to read. "The Good Book" by the Reverend Professor Peter J. Gomes. He was born in Boston, Massachusetts in 1942 and graduated from Harvard Divinity School. He studied at Tuskegee Institute and in 1970 he came to Harvard as assistant minister in The Memorial Church. In 1974 he was appointed Plummer Professor of Christian Morals and Pusey Minister in The Memorial Church, Harvard University. A good friend of mine had given me his book of Sermons several years ago and I had not yet read them. I had heard of Reverend Gomes and that he was really good but I have a lot of books to read.  I don't know why I bought another book by him without reading the first but I did. I thought that "The Good Book" was the last book he had written before his death but it wasn't. 


I began reading and became mesmerized by what I read. It is about reading the Bible. He covered many topics such as "Women and the Bible," "The Bible and Science," "The Bible and Homosexuality," which made it easy to jump around and not necessarily read straight through. As I read more and more I knew that I hadn't adequately prepared myself. I didn't have a highlighter pen or any other means to mark the passages that were most relevant to me.  


The staff of nurses and technicians were in and out taking vital signs and checking on me, of course, and I enjoyed it very much. Several stayed and talked for a while and some commented that they liked coming to my room. I reveled in the attention and met several people that had we been connected in another way would probably have become friends because we shared interests. Everyone asked about the book I was reading and they gave me paper for notes and found a highlighter for me!


I was most impressed by Reverend Gomes inclusiveness. He excluded no one from the love of God. He was also a wonderful writer and at times I felt the need for a dictionary! I read and re-read. The book excited me and touched me   in ways not usually experienced. I finished the book while in the hospital and read parts of the book a second time. I was enjoying a "high" all week long! I recommended the book to everyone. 


A woman who was with social services came to see me and said she would  like for the chaplain to meet me. I agreed that it would be nice. The chaplain was a woman and she came up to see me that afternoon. I enjoyed meeting her but probably talked too much! 


I was so disappointed that I had not known about Reverend Gomes when he was at Harvard. I could have driven to the chapel and attended services and heard him in person. A lost opportunity that I regret. 


I intend to review "The Good Book" again. Especially the chapters of special interest. And I am now reading "The Gospel of Jesus Christ" and enjoying a sermon before sleeping at night! Though he is no longer living and I never met him, he has had a profound influence on my spiritual life and I am grateful to have met him.


A meaningful quote from his chapter on Women and the Bible:


"When the congregation is asked to sing 'Rise Up, O Men of God,' are the women to remain seated, or are they to think of themselves as Elizabeth I did, as a man trapped in the puny body of a woman?"


The Reverend Peter J. Gomes, Preacher to Harvard University
"The Good Book, Reading the Bible with Mind and Heart"

Palm Sunday Miracle!

I received so many cards and notes in the hospital wishing me well and I wanted to make a scrapbook of my mementos to be reminded of the love that surrounded me. So I put them all in a box as soon as I got home and when I was strong enough I went shopping! 


I loved the cards. They were all beautiful and reassuring of the sender's affection and the prayers that were said but there was one special card I received that was very dear to me. My youngest daughter had made me a frog card on her circuit machine and it was adorable!  You are aware that I am extremely fond of frogs! I planned to put it on the first page of the scrapbook.


I bought a scrapbook and some paper and came home with grand intentions. I got as far as placing my beautiful frog on the first page. As I thought about the scrapbook it dawned on me that a top loading scrapbook wasn't going to work because the cards could not be opened. I needed a scrapbook that would allow me to open and read the cards. We looked several places and no such thing seemed to exist any more! We went on line and finally located a company that made scrapbooks but they were VERY expensive. I was discouraged and set the scrapbook idea aside for awhile, returning to Walmart the top loading model we had bought and the extra paper. 


One day I went to look at my cards and the FROG WAS MISSING!!! I searched and searched and was very distraught. Everything was there that should have been there but NOT THE FROG! My older daughter knew how much it meant to me and how upset I was and she methodically went through the living room but to no avail. Finally she suggested returning to Walmart's and inquiring if it  
been found among the return. Having worked at Walmart's in the past she knew the procedure for returned goods. She went to the scrapbook department and went through every scrapbook on the shelves.  NO FROG. I resigned myself to the disappointment I felt.


Several weeks later--the frog had been delivered in early February and now it was Palm Sunday--Cheryl and I stopped by Walmart's after church because I needed a larger wrench than I had to adjust the kitchen sink. She went to the tools department and I strolled down to the yarn department. When Cheryl joined me, she noticed that there was a huge display of scrapbooks behind us.
While I continued to look at the yarn, she picked up a scrapbook, opened it
and THERE WAS MY FROG!!!!! We were incredulous and I was so stunned and happy that I wanted to cry! It was a coincidence, the nature of which was so unlikely, that it cannot be logically explained.


I am now in possession of my FROG again and I have found a scrapbook that allows you to open the pages for viewing. 

We think too small, like the frog at the bottom of the well. He thinks the sky is only as big as the top of the well. If he surfaced, he would have an entirely different view.
Mao Tse-Tung

Read more at http://www.brainyquote.com/quotes/keywords/frog.html#LI8SJzrPZaHoMFwB.99

Too much. Too soon.

In spite of having a good report yesterday, I am not so good. I awoke this morning and wanted to go to A.C.Moore to find the special yarn that was being knitted yesterday into a spiral of scarf. I was determined to go! I was sure they would have it in muted colors of purple and they did. For whatever unknown reason I am excited about the color purple this year. Ironic that the color has been adopted to raise awareness of leukemia and lymphoma. 


We didn't get started until late in the morning but drove to Salem after going to the bank and then sitting in a parking lot trying to orient myself on how to get there. My brain does not remember directions well and I am often confused. The Garmin was also rattled but after a few minutes of thinking clearly I remembered the route. 


We arrived around 11:00 o'clock and should have stopped at the Weathervane for lunch before shopping but I was excited about the yarn and wanted to see it.  The yarn was lovely and I bought two skeins. We spent quite a while browsing around, looking at patterns, planning projects.  


They had a sale on t-shirts so we bought purple t-shirts for sleeping and bought purple photo books for $1.00! We were having a good time. Then we wandered into the bead department and I began to feel tired. Very tired. I walked up to get in the check out line and suddenly knew I was in trouble. I called Cheryl for help and after a few seconds she recognized that I wasn't quite right. I left the basket and headed for the door with Cheryl close on my heels. My balance was very poor and my walking stick wasn't keeping me on course. 


We made it outside but I couldn't hold myself together to get to the car. Cheryl supported me under my arms and for a few seconds I don't remember anything. I slid to the walk and in a few seconds I was laying down and enjoying the breeze. A young woman had stopped to help. She was so very kind and said she had worked on an oncology ward. The paramedics were called, arrived and wanted to know if I had fallen, wanted to go to the hospital, and took my vital signs. They were young and very strong. I did not have the strength to get up on my own. However I was rational and when standing again I seemed to be OK. My blood pressure was low for me but not dangerously so and my blood sugar was normal. If my fever went up and I worsened I would go to Tufts immediately but I didn't think that Lawrence Hospital could help me.


The episode I had today was very frightening and humiliating. Being overcome by a physical condition is a total loss of control. I was embarrassed by my inability to control myself.  I have had two similar episodes where I was overcome by the circumstances and I felt utterly helpless. The first incident happened during my first consolidation. Fortunately I was able to recover myself because I made it to the car and rested there.


There is something incongruous about a 78 year old woman lying on the sidewalk outside a busy store unable to get up! I want so much to be healthy and well and capable of living a normal life.  I have been tired since Halloween. Please God, help me to be patient.

Nagging Fears

Today has been a mixed blessing. I had an appointment with the lab for blood work and a shot that helps my white blood cell count go up. The ride into Boston was pleasant with unusually low traffic and we arrived a little early. Harriet, the woman who runs the lab, was having a break and about four couples arrived in the waiting room. I have nicknamed Harriet my "Chief Vampire" since she has drawn vials from me!  The people who congregate in the waiting room usually arrive in twos. One is the person who has cancer and the other is a loved one, a husband or wife, a sister or brother, a daughter or son. After the initial shyness wears off, they engage in questions and inquiries, sharing casual conversation. The female patients sometimes remark on each other's chemo cap and discuss the growth, or lack thereof, of their hair. The men are not as outgoing. Today, there was a woman who came with her brother, and she was knitting a lovely long curly scarf. Cheryl and I were much admiring it and wanted to know where she found the yarn. She told us and said that it was an easy pattern. 


A brief encounter but a warm and friendly one. They were both from another country, I didn't recognize the language, and the brother spoke haltingly. There seems to be a very special camaraderie between the persons who have cancer and those who are concerned about them. 


Harriet was back and I was called in for blood and a shot that helps reinstate my immune system. Then we waited for the blood to be sent to the blood analyzers. Today I was thrilled! My count was good and I did not have to go to the infusion center! We left and drove home--another pleasant ride with little traffic. I celebrated with a pair of earrings in the gift shop!


I was both elated and a little bit scared. I am more tired this time and I'm having some difficulty with my balance. I list to one side or the other and feel like an old battleship. Of greater concern is that I am worried about my eyes. I am using antibiotic eye drops for ten days. Two drops in both eyes every six hours. I have always been very protective of my eyes because I have worn glasses for most of my life. Until cataract and lasik surgery miraculously restored my eyes to near perfect vision and colors appeared brighter! Now my eyes are not focusing well and I'm having trouble typing on the computer.
On top of it all, the eye-drops are in a ridiculously small bottle and getting another prescription is a pain!


There is always the nagging fear that you will sabotage your own recovery by not having a positive attitude. It is an all encompassing disease.  

Second Consolidation Completed

Today is the last day of my hospitalization at Tufts Medical Center. I am receiving my sixth and last chemotherapy at 3:00 o'clock which takes about an hour and a half and then I will be free to go! I am feeling a little tired and a little off balance because my immune system is destroyed and it will take a few days to build back up. I will be back on Tuesday for a shot to help the process and to give blood and on Thursday to see my doctor. I am anxious to go home but a little sad saying good-bye to the "saints" on the oncology ward! They have truly been wonderful and I will miss their camaraderie and care.


My next hurdle will be another bone marrow test! Then my name goes into the computer for random selection to one of two paths. 


I am on an everything cooked diet until my white blood cells have returned to normal. No salads or other raw foods. I googled diet plans designed to promote health in cancer patients. After years of over-eating, I have to learn to be more concerned. No more pie or cake for breakfast!


I am fortunate because in spite of neglecting my health as I've grown older, I am strong and healthy except for the cancer. Now I'm going to try to get a little bit healthier. 


Twice, Dr. Sprague has acknowledged the fact that I had a stroke and being taken seriously reassures me. And I am sure that she factors in my age as well. 


I have said so many good-byes in my life-time of military moving and they are always difficult! 






  

Growing Old!

I am re-posting a blog that I wrote on February 6, 2010 since it is very apropos to my cognitive impairment concerns!

Bemused & Befuddled

The following arrived in my email.
[Illustrated with cartoon figures of old people]
My forgetter's getting better,
But my rememberer is broke
To you that may seem funny
But, to me, that is no joke

For when I'm "here" I'm wondering
If I really should be "there"
And, when I try to think it through,
I haven't got a prayer!

Oft times I walk into a room,
Say "what am I here for?"
I wrack my brain, but all in vain!
A zero, is my score.

At times I put something away
Where it is safe, but, Gee!
The person it is safest from
Is, generally, me!

When shopping I may see someone,
Say "Hi" and have a chat,
Then, when the person walks away
I ask myself, "who was that?"

Yes, my forgetter's getting better
While my rememberer is broke,
And it's driving me plumb crazy
And that isn't any joke.

CAN YOU RELATE ? ? ? Please send this to everyone you know because I DON'T REMEMBER WHO I SENT THIS TO!
Have a great day who ever you are!
Have a great day in spite of the fact that I’m losing my mind? I am bemused and befuddled by the above. I believe that a sense of humor, especially the ability to laugh at ourselves, is essential to our health and well being, whatever our age, but is the loss of mental faculties really funny? My father suffered senile dementia and my mother’s death certificate listed the cause of death as “Alzheimer’s.” Needless to say, I am more than a little concerned about my risk factor as I grow older. Sometimes I laugh when I forget something but sometimes I feel sheer terror.

However, I think that I do not really find the above particularly humorous because it is a reflection of the stereotype of older people prevalent in our society. There are many persons who are advanced in years who are productive members of society, but in spite of ample evidence to the contrary, the stereotype prevails and often leads to the elderly being treated in a dismissive way. In many facilities for the elderly, residents are referred to as “Honey, Sweetie, etc.” Too often the elderly are treated like children. Children who are sometimes seen but not heard. Not listened to. Not noticed. Overlooked. Not taken seriously.

It is a subtle and pervasive discrimination and most people do not even realize they are doing it. Even some of us who are elderly, join in the joke rather than try to dispel the myth.

The next time you see an elderly person, remember, they are an adult inside an aging body hoping to be recognized and deserving of respect.

It is quite wrong to think of old age as a downward slope. On the contrary, one climbs higher and higher with the advancing years, and that, too, with surprising strides. Brain-work comes as easily to the old as physical exertion to the child. One is moving, it is true, towards the end of life, but that end is now a goal, and not a reef in which the vessel may be dashed. George Sand

Mary Had a Little Lamb

Mary had a little lamb,

whose fleece was white as snow.

And everywhere that Mary went,
the lamb was sure to go.

It followed her to school one day
which was against the rules.

It made the children laugh and play,
to see a lamb at school.

And so the teacher turned it out,
but still it lingered near,

And waited patiently about,
till Mary did appear.

"Why does the lamb love Mary so?"
the eager children cry.

"Why, Mary loves the lamb, you know."
the teacher did reply.

I loved this nursery rhyme as a child and I have loved it as an adult because of the 23rd Psalm and because "Mary" was the Mother of Jesus and "loved the lamb!"

After my first month of being hospitalized and having lost 30 pounds, my clothes no longer fit.  Kohl's was having a sale so Cheryl and I went shopping. As we were paying at the cash register I looked at a display case that was featuring lambs. Easter was coming up so there were a lot of lambs to choose from. They had an especially appealing one that was sort of whimsical with a smile on his face and slightly drooping ears.  I felt perfectly ridiculous buying a lamb to sleep with at age 77!  But I think I felt the need for comforting that a stuffed animal can give a child. I had two stuffed dolls as a child. Sleepy Head and Cuddles! They slept with me every night and I loved them. 

So I bought the lamb and decided he would be my traveling companion to the hospital and that I would sleep with him at night. He doesn't exactly have a name. I call him the Lamb of God and he comforts me just as Sleepy Head and Cuddles did.

There Are Saints Among Us

I awoke this morning with the phrase in my head, “there are Saints among us.”  I am learning to not ignore little hints and hunches like thoughts that pop into my head so I am choosing to write about Saints in my Blog.   According to the Oxford English Dictionary a Saint is “a good person Christians believe will go to heaven when they die; a person of great goodness who after their death is formally declared by the Church to be a saint, and to whom people offer prayers; (informal) and a very good or kind person.” 

I am familiar with some of the well-known saints but am in no way, well acquainted!  So for me to talk about Saints we can choose the first or third definition above and talk about the very good or kind people in our lives that have made a difference.

  

I am a member of the Episcopal Church and in “An Outline of Faith commonly called the Catechism” in “The Book of Common Prayer” under the title of “The Christian Hope,” the question is asked “What is the communion of saints?” and the answer is given “The communion of saints is the whole family of God, the living and the dead, those whom we love and those whom we hurt, bound together in Christ in sacrament, prayer, and praise.”  I am not sure of what they mean by “the whole family of God?”  Do they mean all believing Christians, excluding all other faiths?  I would have to exclude that since my youngest daughter converted to Judaism and I have two beautiful Jewish granddaughters!  It is a beautiful religion and I have been given the title of a righteous Gentile by two Rabbis who are among my personal list of Saints because they have made an inordinate difference in my life.

 

I like the concept of “the living and the dead,” because, again, my personal list includes them.  My parents, both of whom are deceased, still make a big difference in my life.  The list is long.
 

“Those whom we love and those whom we hurt,” is a poignant phrase because we do hurt the ones we love.  Then the difficult task of forgiveness—forgiving and being forgiven—starts.  It may be as small as a hurtful remark or it may be made difficult by one or both persons withholding painful information.  And the relationship can be ripped apart, sometimes taking years for reconciliation to take place, if ever.  There are ways of hurting others which cannot be repaired.  Pedophilia comes to mind or murder or rape.

I do believe that there are special people in our lives, who are saints to us, very good and kind persons who make a difference.  They can be part of our lives for a lifetime or only a moment. “It only takes a moment to be loved a whole life long” as Cornelius sings to Mrs. Molloy in “Hello Dolly!”

Cornelius
And that is all
That love's about

Mrs. Molloy
And we'll recall when time runs out

Both
That it only took a moment
To be loved a whole life long!

In the hymnal there is a song called, “I Sing a Song of The Saints of God” that pretty much sums it up!  The refrain is “and I want to be one too!”  It is one of my favorite hymns.

Text: Lesbia Scott
Music: John H. Hopkins
Tune: GRAND ISLE, Meter: Irr.

1.                I sing a song of the saints of God,

                   patient and brave and true,

                   who toiled and fought and lived and died

                   for the Lord they loved and knew.

                   And one was a doctor, and one was a queen,

                   and one was a shepherdess on the green;

                   they were all of them saints of God, and I mean,

                   God helping, to be one too.

2.                They loved their Lord so dear, so dear,

                   and his love made them strong;

                   and they followed the right for Jesus' sake

                   the whole of their good lives long.

                   And one was a soldier, and one was a priest,

                   and one was slain by a fierce wild beast;

                   and there's not any reason, no, not the least,

                   why I shouldn't be one too.

3.                They lived not only in ages past;

                   there are hundreds of thousands still.

                   The world is bright with the joyous saints

                   who love to do Jesus' will.

                   You can meet them in school, on the street, in the store,

                   in church, by the sea, in the house next door;

                   they are saints of God, whether rich or poor,

                   and I mean to be one too.

This is the Christian version.  I would like for it to be an interfaith hymn but we haven’t progressed that far yet.

I am surrounded by saints at Tufts Medical Center.  People whose names I will not be able to remember. But I will remember their good and kind care of me that has made an enormous difference in my recovery.  And I have received an avalanche of flowers, cards and calls encouraging me, assuring me of love and prayers.  I am on several Prayer Lists of people who are praying on my behalf.  I have been overwhelmed by the response.   And now, I want to be one, too!  A saint!  Being ill with leukemia has been a spiritual experience for me and I am very grateful. 

 

Who are the saints in your life?  Have you been a saint to someone?  Have you made a difference in their life? 

Flashbacks and Frustrations Part II

Peaches, the only thing I could eat.  Chilled, canned, half-peaches.  They doubtless contributed to the weight loss of 30 pounds!  But they were the only food on the menu that tasted right.  I completely lost my appetite for food.  Unusual for a woman who was overweight because she loved to eat.  It all tasted like hay!  Dean, who was here at the time and a very disciplined person remarked, “Just suck it up, Mom, and eat it!”  But I couldn’t.  My children brought in food from local restaurants but I had the same reaction.  I barely managed to swallow enough food to keep alive.  I was released from the hospital and about five days later my appetite began to come back while eating Pot Roast, Pot Roast with potatoes and baby carrots.  Cheryl was here and she is a very good cook.  She had prepared the Pot Roast for Dean and Travis who drove up to visit me.  I had a very small serving but it awakened “taste” again and it increased every day.  I have never enjoyed Pot Roast so much!  One of the nurses came in to see me today and asked if I was still eating peaches!

I did go shopping for them but discovered that they were not stocked in our two largest grocery stores.  Cheryl and I were browsing the shelves in Target and on the bottom shelf were several cans of half-peaches that were being discontinued.  We bought them all!  I think I am fond of them because I remember eating them as a little girl.  Mother served them often with a dab of mayonnaise and grated cheese on top.  It was a very popular salad then.

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I did not realize how sick I was.  The nurses have said to me, “You were very sick.”  And I’m beginning to realize how very sick I was.  I couldn’t have diagnosed myself as having leukemia but I could recognize that I wasn’t feeling well and wonder why I waited so long to see my primary care physician.  It all started with bronchitis shortly before Halloween.  I have a history of getting bronchitis but I hadn’t had a case in several years.  A lot of it was going around and several of my friends had it.  Most primary care doctors have physician’s assistants to see patients when they are heavily booked, and they usually are, so I booked an appointment with the assistant.  I was diagnosed as having bronchitis and left with a prescription.  But my condition did not improve.

My son, Dean was hosting a family gathering for Thanksgiving and I was planning on going.  But I felt too ill to drive for seven hours to get there.  I was very disappointed but I was just too sick.  Sometime in December our Interfaith Book Group met at a local restaurant and I thought I was well enough to go.  A good friend picked me up but I was tired throughout the dinner and I noticed that I could only eat a few bites of food.  Christmas was my next clue.  My granddaughter, who is a gymnast at Wilson College in PA, came to stay with me while she worked out with a college friend at a gym in Boston.  It meant picking her up at 10:30 pm at the train station.  I had to take a nap every afternoon to do it and I was still clueless.  I kept thinking that the end of January was just right around the corner and then I could see my doctor! 

The next incident frightened me.  I awoke in the morning and while dressing fell to the floor.  I began to develop a rash which I attributed to an allergic reaction to a small bug in my bed sheets.  I got up again, going in the direction of the hall, and I fell again at the top of the stairs.  It was as if I was being pushed.  I had absolutely no control.  Several things came crashing down the stairs.  I don’t remember exactly how I got downstairs.  I remember itching that night and sincerely praying to die!  It was miserable!  I slept in my second bedroom and, in the morning, called my daughter Missy who had worked as a paramedic in Brooklyn and asked what would help the itching.  She said Benadryl so I asked a friend to get a tube for me.  The itching finally subsided and my balance was restored and I saw my Primary Care Physician on our appointment date February 2, 2012.  He heard my story and ordered a blood test.  It had to be a fasting blood test so I went in the next morning and had it taken.  That afternoon he called with the results.  I was very sick.

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If I Only Had a Brain!

Lyrics to If I Only Had A Brain :

(Scarecrow)
I could wile away the hours
Conferrin' with the flowers
Consultin' with the rain
And my head I'd be scratchin'
While my thoughts were busy hatchin'
If I only had a brain

I'd unravel any riddle
For any individ'le
In trouble or in pain

(Dorothy)
With the thoughts you'd be thinkin'
You could be another Lincoln
If you only had a brain

(Scarecrow)
Oh, I would tell you why
The ocean's near the shore
I could think of things I never thunk before
And then I'd sit and think some more

I would not be just a nuffin'
My head all full of stuffin'
My heart all full of pain
I would dance and be merry
Life would be a ding-a-derry
If I only had a brain

The above lyrics are from the much beloved childhood movie, “The Wizard of Oz.”  Ray Bolger, a very talented dancer played the part of the Scarecrow, and everyone knows that Judy Garland was “Dorothy.”  I have watched it numerous times because I have four children and we watched every year.  It was family night complete with hot buttered popcorn.  At least 18 times!  It is a wonderful movie!

My feelings today can best be expressed by the Scarecrow’s final line,

“If I only had a brain!”

Then, I could do what I want to do!

·        I would like to feel in control of my life again.

·        I would like to feel confident about speaking again.  Not speeches, just conversations without the loss of words.

·        I would like to be able to read at my former reading rate. It has slowed down mightily and become a frustration instead of my greatest pleasure.

·        I would like to enjoy the convenience of driving again.

·        I would like to be free of worrying about repeating myself.

·        I would like to concentrate and focus on one thing at a time.

·        I would like to remember things!

·        I would like to not be frightened at the thought of being alone again.

The American Cancer Society reports “there is no way to prevent chemo brain while getting cancer treatment.  For some people, treating their cancer will mean trouble with thinking, memory, planning, and word finding.”

“The brain usually recovers over time.  They might last a short time, or they might go on for years.  These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so.  They affect everyday life for many people, and more research is needed to help prevent and cope with them.”

And there are many things that must be faced, like changes in your spiritual life, and you need to be in full possession of your faculties to be aware of them.  So now, after four and a half months of treatment I am feeling like the Scarecrow

“if I only had a brain!!!”

Flashback and Frustration No. 1

This is my third try to write about what I recall of my first 27 days of treatment.  I lost the first two attempts due to a power failure that resulted in my blog not saving.

My first memory is of Karen (my priest and a very dear friend) driving me here, helping me to fill out all the admittance forms, getting a wheelchair and pushing me to the 8^th floor, and saying good-bye while weeping many tears.  I have known Karen since she came to our parish as a student of the Episcopal Divinity School.  Karen is about 13 years younger than I am but we became good friends very quickly.  I was asked to be one of her supervisors during her training with us.  Our friendship continued when she graduated and I joined a women’s group at her parish.  She had several roadblocks on the way to Ordination but she finally made it and I was a thrilled participant!  I have never known anyone better suited to the job.

  

One day shortly after she began as a Priest-in-Charge she called me and asked if I could possibly help her out!  Her secretary was resigning and she needed someone for three months while she looked for someone to hire permanently.  I was glad to help her!  The three months became eight years!  And when Karen was ordained a priest she was asked me to give the sermon.  It was one of the proudest moments of my life.

I don’t know when Dean arrived at the hospital but it was soon.  I don’t know who called him or how he got there so quickly but he was there in time to have a brief argument with me concerning my future and I think that a doctor was present.  I remember telling him that I wasn’t afraid to die and I thought that moving into assisted living until it became necessary to call hospice was a reasonable plan.  I was 77, going to be 78 in less than three months, and no one would be shocked at reading my obituary in the newspaper.  My parents had died at the ages of 86 and 88 but the quality of their lives had deteriorated so much because of sundowner’s syndrome and Daddy having to be placed in a Veteran’s facility and Mother, worn out from trying to care for him, moved into a home for the elderly.  When Daddy died, Mother came to Massachusetts to live in a nursing home near me and her death certificate read that she died of Alzheimer’s.  Perhaps I was just trying to avoid all of the pain and sadness of their final years.

Dean, a Colonel in the Army, adamantly refused to consider my suggested plan and in his best command voice said “Absolutely not! You will receive treatment and recover,” or words to that effect.  That was my first realization that I was losing control over my life!  

I remember having a vision at the end of our struggle in which I was elevated towards the ceiling and laying in a hammock being tossed back and forth by a group of laughing women.  It was a wonderful, joyful feeling of happiness.  The vision had to do with death and knowing that there was nothing to fear. It was the first, and last, vision I have ever had. Of course I am grateful for Dean’s insistence because I have been very blessed in my recovery thus far.
And very grateful to be given a greater number of years to live.  I have a feeling that God is calling me to do something.  

Dean, who was retiring from the Army at the War College in Carlisle, PA and had turned over responsibility for his affairs, was best able to take leave time and be with me for the first two weeks.  Missy, who teaches in New York City, took over for the next week when she had Spring Break and Cheryl came from Benson, AZ to take care of me at home.  Chuck, my oldest son who teaches at a Detention Center in Kansas has been part of the team and has called almost every night for four months to check in to see how I am doing and to tell me he loves me.  The best medicine in the world!

Some of my grandchildren came to see me! This was most surprising because being a military family we have wound up scattered all over.  I don’t remember exactly what order they came in—only that they were there!  Charlie and Kady, Dean’s children, came; Sarah, Chuck’s daughter was here from Washington, DC with Adina, Missy’s daughter from NYC;  Bekka, Cheryl’s daughter, now attending college at Wilson in PA, was here with her friend, Monique; and Travis, attending college at PA State, came with Dean for a visit after I went home.  Six out of sixteen grandchildren to cheer you on is wonderful!

I also received many cards from friends wishing me well and telling me that I was being prayed for and was loved.

To be continued!

Chemo Brain

This is my third try on writing a blog I now call Frustration and Flashbacks.  I have tried twice and both times lost the blogs because I am plugged into the Tufts Medical Center which frequently has power failures.  It is one of the most prestigious hospitals in America and deserves all the praise it receives.  It is wonderful and I am grateful to have had their medical insurance and to have been sent here.  But their frequent power failures are very upsetting!

I had intended writing about my first hospitalization, an experience that I do not remember well.  Several of the staff has commented on how sick I was and how amazed they are at my recovery.  But I think that tonight, after losing two blogs, I will write about what is bothering me the most.  Chemo Brain.

I did a computer search on The American Cancer Society and was encouraged to read that “the brain usually recovers over time.”  The following are symptomatic of what doctors and researchers call chemo brain or “mild cognitive impairment.” 

•        Memory lapses
•        Trouble concentrating
•        Trouble remembering details like names or dates
•        Trouble multi-tasking
•        Taking longer to finish things
•        Trouble remembering common words (unable to find the right words to finish a sentence.

“The people who are having problems are well aware of the differences in their thinking.”  It can be very embarrassing and I worry a lot about repeating myself.  I can provide personal examples of each of the above.  I am doing things more slowly than I used to even when I’m feeling good.  Especially reading.  One of my greatest pleasures has become a source of frustration to me.  I have trouble frequently remembering words.  I couldn’t recall the name of a friend whom I have known for almost 30 years! 

Many things can factor into the above problems.  I have come to think of myself as a trifecta of conditions.  I am 78 years old, I had a stroke four years ago, and am now recovering from leukemia.  When I have memory lapses, take longer to finish things, or have trouble remembering common words I wonder if it’s because of being older, having had a stroke or chemo brain!