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.

******************************************************

  

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.

****************************************************** 

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!