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! 

Friendship

Yesterday was a wonderful day spent with a dear friend of mine whom I have known for at least twenty years.  I met her at an all day presentation by Carter Heyward at the Episcopal Divinity School in Boston.  She was interested in the work I was doing as Clinical Director of the Middlesex County D.U.I.L. Program, a two week inpatient treatment program for court referred multiple Driving Under the Influence offenders.  I was interested in the possibility of introducing a class on the role of spirituality in recovery.  


Our friendship seemed instantaneous. Inasmuch as she was living in Boston at the time with her husband Denny and I was living in Tewksbury, MA our paths didn't cross too often.  But invitations were extended and the friendship grew.  When they moved to a new home and held a House Blessing I was asked to say a prayer in the prayer room.  I attended a birthday party for Pat and gave her a small collection of Santas since she had just had her "Santa" book published.  I invited them both to a dinner party of "Paella" and introduced them to Paul and Jean who were going on a tour of Spain.  


I hired Pat at the DUIL Program to teach a class on spirituality and she was a great asset to the program.


At some point in our friendship, I'm not sure exactly when, we started meeting at the Legal Sea Foods restaurant in Burlington.  We always ordered the same thing!  The Jasmine Special, a wonderful dish of shrimp, broccoli and rice with Monterrey Jack cheese.  For dessert we would share Key Lime Pie!  


She went to EDS and earned her doctorate degree. She studied to become a priest. She read the psalms in Hebrew and wrote a translation of the Book of Psalms. Denny and Pat retired and moved to Amherst, MA. It was a two and a half hour drive but I managed to drive there several times. Then Denny was diagnosed with leukemia.  He valiantly fought the disease but eventually succumbed to it. I attended his funeral.


Pat remained in their house for awhile but then decided to move to North Carolina across the street from one of her daughters.  She is happy there but misses Massachusetts.  Yesterday she was back for a Homecoming at her Alma Mater, Wellsley!  We met at Legal Sea Foods in Burlington and, as always, ordered the Jasmine Special.  Cheryl was with me and had the opportunity to meet Pat.  After lunch, we drove her to Wellsley and enjoyed a tour of the campus.  It is beautiful! 

We have never lived near each other yet a friendship formed and has grown.  I greatly admire Pat.  And am very happy that our friendship has endured.  May we be blessed with future opportunities to enjoy each other's company.      

"When I was sick and lay a-bed...The Land of Counterpane - Robert Louis Stevenson

Making lists as a means to remembering important dates and events is becoming a way for me to jog my memory.  They are a sort of shorthand reminder of my history which I do not seem to be able to recall rapidly.  The very act of writing certain information down becomes a "re-learning" technique and helps me to recall significant events.  For instance, my medical history.


When first asked, I had forgotten several instances of ill health.  Rheumatic Fever, I remembered as being of profound significance, limiting my early childhood and determining future characteristics. I was about four or five years old when it was diagnosed and about ten when I was declared cured.  I took one of the Sulfa drugs for three years, a relatively new drug .  I remember many trips to the hospital for intravenous shots and illnesses.  Strep throat was a common one.  I was not allowed to run or play and spent a great deal of time in bed.  Fortunately I loved to read.  Among my favorite books was "A Child's Garden of Verses" by Robert Louis Stevenson from which I adopted my life-long motto, 


"The world is so full of a number of things,
I'm sure we should all be as happy as kings. 


My mother and I lived in an apartment where my grandmother, Nanny, and her husband, "Doc," (the only dentist in Blackwell) also had an apartment.  Mother and I were waiting for the return of my father who was serving in the war.  I missed time in school and my mother had to carry me to a balcony so I could be exposed to the sun and fresh air.  A very traumatic incident occurred one day.  I was the only person on the balcony, resting in a lounge chair, and I saw a caterpillar slowly crawling across the balcony.  I was terrified!  I was terrified by worms and all creepy, crawly creatures!  Fortunately, my mother arrived just in time to rescue me.  I was a very obedient child and would never have left on my own two feet!  I wasn't allowed to walk.


I wasn't allowed to do many things because of rheumatic fever.  I couldn't take ballet which I longed to do.  I didn't participate in any sports and when it became possible, I was a young teenager and too embarrassed to try.  I graduated from High School in three years and started college a year early because my father was being sent to Germany again.  I was very shy and my first two years at Stephen's College in Missouri didn't help.  An all girl's school was not a good choice for me.  I didn't have a date for the first year.  But I did learn how to swim!


I was drawn to Sunday School and started going at a young age.  And somewhere along the way I adopted the belief that because I had been ill as a child, I would be free from illness in my old age.  It hasn't worked out that way and I was very shocked when diagnosed as having leukemia!

This blog entry has gone off track!  I meant to write about making lists.  Thus far I have made the families birthday list, my list of medical information, a list of my spiritual life and a list of things to be done and a list of names participating in my various activities.  Old telephone directories (usually hand made by volunteers) are useful.  The lists are helping me to remember and helping me to avoid embarrassing lapses of memory!  


   

Fully Rely On God

On our last tour of duty in Germany we met a charming couple who lived in the building next to us.  He was a Colonel in the Army and his British wife had been an actress in London.  Their home was lovely and I fell in love with her collection of Staffordshire dogs that she displayed on a large table placed behind her couch.  I decided that I wanted a collection also, and during a trip to Italy, I saw a winsome looking frog in a store window and decided to collect frogs!  Now it is forty years later and frogs are still finding their way into my collection.  I have collections among my collection--frog cups, frog teapots, frog pitchers, frog t-shirts, frog jewelry, frog planters, frog frames, stuffed frogs, children's frog books for my grandchildren and a few frog books for adults.  My email address is DonaFrog@comcast.net.  I have frogs from several foreign countries.  I have little, tiny frogs and very large frogs and every size in between.  


Probably the best known writing about frogs is the story of the fifth plague Moses brings against Pharaoh.  
1. Then the Lord said to Moses, "Go to Pharaoh and say to him, 'Thus says the Lord: Let my people go, so that they may worship me.
2. If you refuse to let them go, I will plague your whole country with  frogs.
3. The river shall swarm with frogs; they shall come up into your palace, into  your bedchamber and your bed, and into the houses of your officials and of your people, and into your ovens and your kneading bowls.
4. The frogs shall come up on you and on your people and on all your officials.'"
5. And the Lord said to Moses, "Say to Aaron,, 'Stretch our your hand with your staff over the rivers, the canals, and the pools, and make frogs come up on the land of Egypt.'"
6. So Aaron stretched out his hand over the waters of Egypt; and the frogs came up and covered the land of Egypt.
7. But the magicians did the same by their secret arts, and brought frogs up on the land of Egypt.
8. Then Pharaoh called Moses and Aaron, and said, "Pray to the Lord to take away the frogs from me and my people,, and I will let the people go to sacrifice to the Lord."
9. Moses said to Pharaoh, "Kindly tell me when I am to pray for you and for your officials and for your people, that the frogs may be removed from you and your houses and be left only in the Nile.
10. And he said "Tomorrow." Moses said, "'As you say! So that you may know that there is no one like the Lord our God.
Exodus 8:1-10 NRSV


Pliny, the Roman author who  perished in the eruption of Vesuvius in 79 AD had graphic ideas of the frog as a sex object. In his Natural History he gives particular directions telling how a husband might make his unfaithful wife take an aversion to her lover by means of a frog.
The Symbolic Frog, p. 118 in Frogs by Gerald Donaldson 


I do not love real frogs! I only find inanimate versions appealing! 


My friends, Chris and Jim, brought a gift for me to the retirement and gave it to me the day after, before they left to drive home.  It was a t-shirt with a frog on it which read FROG--Fully Rely On God, giving it's source as John 3:16.  "For God so loved the world that he gave his only Son, so that everyone who believes in him may not perish but may have eternal life."  My frogs took on a different meaning.  It struck me that I had been surrounded by the most promising message in the Bible.  The promise of eternal life. And I felt assured that I did not need to understand exactly how God worked, only that he did work.  And I needed only to rely on that.  It was a powerful realization. 

Retirement

My son, Dean, who was retiring from the Army with thirty years of service, was expecting the date to be set sometime in April.   I was expecting the date of my first consolidation at the same time.  I had an appointment with Dr. Sprague and her intern, Dr. Chakra.  Chakra is his first name but everyone in the hospital calls him Dr. Chakra.  He is from Nepal.  I have always wanted to attend Dean's retirement ceremony because I had missed his father's due to our divorce.  I had also missed my father's retirement because we were stationed in Germany at the time.  Dr. Sprague seemed to sense my deep desire and decided to delay the consolidation, making it possible for me to go to Pennsylvania!  She scheduled it for May 3rd.  She also decided to remove my pick and to have a port installed for the remainder of my treatment so I wouldn't have to worry with flushing the pick daily.  Dean's retirement was set for April 20th and I flew via Southwest to Pennsylvania on the 18th.  I am so appreciative of Dr. Sprague's sensitivity to the emotional needs of her patients. 

The retirement ceremony was attended by Missy, her two daughters (my granddaughters), and her most recent boyfriend, Lee; Bobbie, Dean's ex-wife and their three children, Travis, Charlie, and Kady (my grandchildren); Dean's former mother-in-law, Kay McClelland; and Chris and Jim Chapman, a classmate of my husband's and the person for whom Dean was named!  Dean's due date to be born was very close to the end of February and it was a leap year, the day of Jim's birthday.  Both Jim and Chuck had had a few drinks and Chuck agreed that if Dean were born on leap year day, Dean would be named after Jim.  Dean Chapman Stodter instead of Dean Travis Stodter, Dean being the name of his maternal Grandfather and Travis, the name of his Great-Grandfather.  As luck would have it, Dean was born on leap year day!  He was named and christened Dean Chapman Stodter. 

There were many of  Dean's co-workers, fellow classmates and friends present.  After several presentations, Dean received the Ancient Order of Saint Barbara, which is rarely awarded and a great honor to receive as an Artillery man; the Legion of Merit Medal; and a Certificate from President Barak Obama thanking him for his thirty years of service.  Then Dean was given the microphone.  One minute for one year!  He had put together a wonderful slide show which showed his Great Grandfather, Col Ezra Stodter, a graduate of West Point, and his family; a slide of his Grandfather, Col. Charles Stowe Stodter, a graduate of MIT--his brother John was the graduate of West Point; and a wonderful slide of his father, Col. Charles Stowe Stodter, Jr.; and a slide of his Grandfather for whom he is named, LTC Vonual Dean Beavers.  He also showed a slide of me and acknowledged my influence!  Dean recognized everyone and paid tribute to them all.  150 years of service!  Everyone applauded enthusiastically at the end of the speech.  Dean was "retired!"

Part of my desire to be at the retirement was because I felt that it was, in a way, my "retirement" too.  My father was a member of the National Guard when I was born, later to fight in WWII, and to serve for 33 years.  I married a young lieutenant who was a career Army officer, had a son who was a career Army officer and had three grandchildren who had served, two of whom were wounded.  Now I am no longer a "dependent!"  I am still eligible for medical coverage, the commisary and PX rights but I am without a "sponsor!"  It seems strange.  I have lived as a civilian for 30 years but have never identified myself as one!

Afterward, we all gathered at a cafe run by the Menonites who very graciously, closed the cafe to other customers and prepared a delicious spread of hors d'ouevre.  Everyone was in a festive mood and there was much laughter and good conversation.

At last, it was over!  Everyone poured into the parking lot and drove to their homes or hotels.  A good time was had by all and I was still standing! 

Rearranging the Kitchen

Cheryl, my daughter came to Massachusetts from Tucson, Arizona, the last week of February to oversee my well-being and recovery from leukemia.  Melissa, her younger sister, and Dean, her older brother had covered the 26 days I spent in Tufts Medical Center on the oncology unit.  My oldest son, Chuck, who lives in Emporia, Kansas, teaches at a juvenile detention facility year round, has faithfully called almost every evening to check-in on my status and to tell me that he loves me.  Missy spent her spring vacation with me, and Dean, a colonel in the Army, had taken leave time to be with me.  I am very grateful for the time and attention they have given me.  It has been an overwhelming reponse to a medical condition that I never suspected having! 

I wish that I was organized enough to write about my experiences as they happened.  I'm not, but I have kept a list of all the things I want to blog about.  And I hope that the readers of my blog will be able to understand and make a coherent whole from the many pieces.  Today I want to blog about the reorganization of my kitchen by my daughter Cheryl!  It is an overwhelming undertaking!

I think some background information is necessary.  I have completed my initial treatment and did very well.  Since then I have had my first "consolidation," a six day period of chemotherapy.  I did well but predictably my white blood cell count faltered.  I was given two infusions and rallied.  Once again I was pronounced as doing well and my second "consolidation" is scheduled for June 4th.  I became 78 years old on my birthday, 24th April 2012.  Although I am doing very well, I tire easily and my sense of balance is frequently a problem.  I am most frustrated by the phenomenon known as "chemo-brain"!  The inability to remember certain words, names, and information.  I forgot the name of a friend and fellow church-goer whom I have known for nearlly 30 years!  It took two days before I recalled it!  The condition is supposed to improve with time.  So age and chemo-brain conspire to reduce me to complete helplessness at times. 

Admittedly my kitchen was a mess.  I live in a small condo and there isn't much room.  Cheryl decided to move all of the food items to the kitchen and make space for them by moving all of the pots and pans paraphanalia to the landing on the way to the basement.  In the process of empytying
nearly all the shelves to the middle of the floor, it was discovered that I not only have an excess of food but also have an excess of kitchen utensils and appliances!  And I do not remember buying most of them!  It's as if I've been in a black-out for years!  Do I laugh or do I cry?  I felt like doing both!  We have three piles: things to keep, things to be thrown away and things to be taken to a thrift shop.  I have read about older persons tending to hang onto food items long past their expiration date but buying appliances when you already have them must be a sign of something very unpleasant.  It was humiliating!

The kitchen is taking shape once again and all the excess will soon be removed.  It has taken two days to finish the project!  I think the prayer of the day will be to keep it simple and to not duplicate.  And to remember that my daughter has rescued me from a mess that I could not have cleaned up.

Coping with illness, growing older and a computer.

During the discernment process I had chosen to meditate on the above scripture concerning Abraham’s wife, Sarah, who was blessed by God and gave birth to a child when she was “too old” to have a child. There are many ways of bringing forth new life and that was my prayer. To bring forth new life in old age.

It is still my prayer. And this blog is somehow part of gestation. I am awaiting the birth of new life. What form that new life will take I haven’t a clue. Meanwhile I am pursuing the path that I had hoped to pursue as a deacon. I am involving myself in additional interfaith activities. And I am exploring the experience of growing older and what it means to be “too old.”
                                                                                                           Excerpt from a previous blog.


I became ill on Halloween with a case of bronchitis.  On Thanksgiving I had to decline a visit to my second son who always invited any family members who were able to gather for the holiday.  By Christmas I was worn out when a granddaughter visited me and I required a nap everyday to function.  I rallied for a few occasions in January but was anxious for January 30th when I had an appointment to see my primary care physician.  Just before my appointment I broke out with an allergic reaction and momentarily lost all sense of balance, tumbling at the top of the stairs.  I was very frightened.  

I saw my doctor and told him my tale of woe.  He ordered blood work for me and since it required  fasting, I went in the following morning.  Two hours later he called and asked me if I could find a ride to Tufts Medical Center for an appointment.  He said that he had conferred with two other doctors and that their concensus of opinion was that there was an 80% probability of my having leukemia!  I was stunned and shocked beyond words and scared.

I was 77 years old and lived in a condo alone.  Most of my friends are older and don't drive out of town and my younger acquaintenances were all working.  I finally reached my priest--The Reverend Karen Ann Campbell--for whom I had worked eight and a half years--and she drove me into Boston and I was hospitalized.  I really thought I was going to die.

From this point on my memories will be scattered.  I am not finished with my treatment yet and I am still suffering from "chemo brain!"   I spent the month of February in the hospital and did very well but I am returning in a week for my first "consolidation."  A period of six days receiving a lighter dose of chemotherapy to be followed by a second "consolidation" approximately one month later.