Thursday, February 28, 2008

Meningioma Brain Tumors-Statistical Recurrence

We, at this time, thanks to Nancy A, were in touch with a neuropathologist, Dr. Bill Whetsell, Jr., and learned from him that a meningioma tumor has about a 15% chance of recurring and is more likely to do so in women. It was too late now; I had already had the recurrence. Someone should have made us aware of this sooner.

We learned also, from Dr. Whetsell, that
''Ashlyn has some active meningioma cells that could conceivably result in a third tumor.” Fear gripped us. He strongly recommended that
“Ashlyn's condition would need to be watched closely”, so Jack and I realized then that I would need to have, at least once a year either a CT Scan or an MRI (Magnetic Resonance Imaging that also lets doctors see inside the skull). So every year at this time, there is a certain level of anxiety in the uncertainty of what the scans might show. But, each time so far, it's been music to our ears when are have heard the radiologist say, as he compares the new scans to the previous ones, and we hold our breath, “I see no changes.” What an overwhelming sense of relief! No third tumor! Thank You, Lord!

Then Jack and I while on our way to the Waffle House, would talk about ''What if something had shown up on the scan? It would have turned our world topsy-turvy against. No change! Beautiful words!

Sunday, February 24, 2008

Seeking Answers to My Set Back

Jack called again for me, to make an appointment with the neurosurgeon in Columbia.

“This is Jack Gray. I'm calling for my wife, Ashlyn.......'' (He would have to make many a call to the doctors for me; I find it extremely hard to try and explain anything.... especially over a telephone.) Jack was told that the neurosurgeon would need a CT Scan, in order to determine if there had been any change since the last scan.

O-o-oh! A hold up! We needed to be doing something quick! Time was of essence! I was losing more and more ground every day.

At long last, we drove to Columbia for the appointment carrying the CT scan with us. Jack, again, helped me tell Dr. Paysinger how much I had regressed. But Dr. Paysinger, too, had no explanation as to what was causing my worsening condition or what we could do about it. The situation seemed desperate. We just had to get in touch with somebody who can tell us something! Dr. Paysinger knew of a Dr. Cook at Duke University Medical School that might be just the one who could tell us what was causing the set back.... and what to do about it. So, with great hope we decided on the spur of the moment to leave the next day for Durham , N .C .

Jack, with his expectations, and I, in my deteriorating condition struck out in a van he had borrowed to ensure a more comfortable trip in case I needed to lie down. Surely the doctor at Duke would have some answer!

But, to our disappointment the Duke doctor too, had no explanation..... except there was a possibility that maybe a small blood vessel had ruptured in my brain, which would be causing a lessening of my motor control on my right side, but Dr. Cook was not able to tell us anything that could be done to help my condition.

I thought back.... and remembered that bad cough I had had for such a long time. Possibly that had caused my set back. But still the Duke doctor didn't know what could be done about the regression. No remedy! I felt we couldn't win for losing! No one had been able to tell us anything. So we returned home from Durham with a sick feeling in our stomachs, not knowing whether I could progress out of this stage or not. There was nothing that could be done about my condition; I was going to have to start again, from scratch. We would just have to make, somehow, the most out of a bad situation. I felt I had nothing, at all, going for me. These were depressing days....for both Jack and me. We were having to try to adjust to a completely new, different and unwanted life-style.

Wednesday, February 20, 2008

SET BACK on My Recovery


It started gradually....almost undetectable. It didn't seem like much at first but I began feeling uneasy about it. Then I sensed something very wrong. I began experiencing lack of energy and weakness.....persistent weakness.....accompanied by general exhaustion. It now became a certainty; I couldn't believe what was happening. This just couldn't be true! What was wrong? I could feel myself getting worse by the day.

Jack called for me, and then went with me to an appointment with our family physician. Jack could explain things about my regression to the doctor that I would be unable to get across to him. The physician checked me but said he had no explanation as to why the regression was happening or what could be done about it.

We were devastated! At the same time my right arm would no longer reach out as it had been able to do just a week prior to this, or be able to swing to-and-fro as I walked around the pond. Now gradually, my arm was beginning to hang limply by my side, becoming paralyzed again.

(It would stay this way for nearly a year and during this time, as far as usage, it might as well have been cut off.)

And then I began finding that walking was becoming more and more difficult.... and exhausting. I could hardly walk without assistance and couldn't walk from one chair to another without feeling completely drained. My legs felt like they had lead in them. Even without exerting, I felt exhausted all the time. In a period of about ten days I was now dragging my right foot and my right arm was like that of a rag doll. I was losing it all....the little progress I had just made. It was a nightmare.

Sunday, February 17, 2008

Neurosurgeon's Progress Report

GRAY, ASHLYN

4-5-83:

“This lady returns today for her first checkup following a craniectomy and removal of a meningioma in the left frontal parietal area. Since going home, she has shown a great deal of improvement and walks in to the office unassisted. She is speaking better and using the right hand better, but does so when she is rested and not excited than she does otherwise, according to her husband. This is expected. She is getting physical therapy and speech therapy at this time. She has no headache, nausea or vomiting and except for the frustrations with speech and decreased strength in the arm, has been doing well.

EXAMINATION: The scalp is well healed. The craniectomy site is obvious and is soft and pulsating. The patient is alert, oriented, with a significant aphasia at this time. She can communicate to some degree. Speech is in short phrases and words, however, She appears to receive without difficulty.

SENSORY: Sensory testing over the trunk and extremities reveals some deceased sensory perception over the right side.

MOTOR: Motor testing reveals a right hemiparesis, with the right arm much more involved than the leg. She can ambulate fairly well without assistance but still has marked decreased use of the arm. This is improving according to her husband. She can elevate the arm and hand above her head and has fairly good flexion and extension. She has a very poor handgrip. Reflexes are increased on the right side when compared to the left.

COMMENT: Mrs. Gray is doing well. She still has some obvious neurologic deficit, but has improved a lot since her discharge from the hospital. I think she should continue working with her physical therapy and speech therapy, and is encouraged to do as much as she can at home. She has not had any seizure activity, but is to continue her anti-convulsant medication.”

B. Daniel Passenger, M.D.

BDP/Cm

This was my first follow-up appointment with Dr. Paysinger and I had been able to walk into his office unassisted. I had been taking long walks and getting my strength back. I could now elevate my right arm above my head and use my fingers well enough to pick up cough drops by the paper wrappings. I was beginning to comprehend if spoken to very slowly and able to use short phrases. I was making very good progress and I was proud of myself. But I was totally unprepared for what was to happen next.

Saturday, February 16, 2008

MY DEAR FAMILY- Everyone Helped

Jack was having to do almost everything for me.... including helping me get dressed. He would have to tie my bows, help me get my hose on, hook my pearls, change my earrings, get my bra hooked........ In fact, I found a little note I had written at this time describing my situation: Every day Jack would have to hook my bra for me. I hated to have to call on him every time I wanted to get dressed......when often he would be busy in his office. I didn't like having to be dependent! I finally progressed enough to be able to pick up one end of my bra with my good hand, switch it over to my bad hand for holding purposes, catch the other end with my good hand and take it around my back and on to my stomach. There I would be able to fasten the hooks with my good hand, then turn the bra around and stick my arms through the straps. I was so happy. I had crossed a milestone! And had come one step closer to independence, even though I had to lean on Jack for just about everything.

Jack was so good about doing things for me. He bought me shoes with velcro closures, so no strings had to be tied. He called the doctors for me and explained things to them since I couldn't. He was, and still is, so much help in preparing a meal, especially the Sunday morning eggs and cutting up vegetables for salads.

Because I love the yard so much, it made me so happy when Jack and John decided to outline the flower beds in the back yard with long boards that bend easily to separate the beds from the lawn.

Julie and Sally alternated weekends to come be with me and be on call for anything I needed done..... to cut my fingernails or toenails, to shave my legs or under my arms. They took their responsibility very seriously and came religiously even when Julie had to make the trip with her baby, Lane and during her pregnancy with baby, Nathan. Among other sewing jobs she did for me, Julie sewed velcro on a number of my jackets so I could close them by just touching the two sides together. This was such a big help since I could neither zip nor button.

And as you know Eleanor, very conscientiously, took the responsibility on her shoulders, of lining up Speech Therapy and other health care programs after making suggestions to Jack as to what I would need in the way of help when released from the hospital.

Friday, February 15, 2008

Helpers Were So Appreciated



We were extremely thankful for three excellent therapists and we realized how fortunate we were to have adequate insurance to help pay them. I had a wonderful husband, four precious children, and a maid, Myrtle, who all helped me with anything I couldn't do myself. They were dedicated to helping me recover, and were making it possible for me to devote all my time and energy to getting well and back to normal.

We had a lovely new home that backed up to a pond which afforded me a great place to walk and recuperate and friends who encouraged and cared about me. I had every advantage! And I felt truly sorry for those that didn't.

Several months after my surgery, I developed a real bad cough that hung on week after week. It scared me because it hurt my head to cough and I was afraid, with so much coughing, I might be popping something loose in my head. I had no protection for my brain... no skull bone...no plate...nothing between my scalp and my brain on the left side of my head. Without protection, I was terrified of maybe stumbling and falling or of being in an automobile wreck.

On my recuperative walks around the pond I had to be so very careful. I was unsure of my footing because of the uneven ground, so I had to watch my feet as I walked to guard against falling. No looking up at the gorgeous pink clouds as the sun was setting in the western sky. No looking ahead to the pond with the little yellow blossoms on the many lily pads. My eyes had to be glued on my feet.

It was not known at this time but it would be as much as a year after the removal of the brain tumor until the protective plate would be inserted, that would substitute for the bone that had been removed for my surgery.

Thursday, February 14, 2008

A Typical Day

Breakfast

Slowly work at getting dressed (so slow with just one hand)

Appointment with either speech, physical or occupational therapy

Lunch

Nap

Walk; do exercises; do homework

Supper

Do cross-stitch with TV going

(And the same the next day, and the next day, and the next.)

It is impossible for a normal, busy person to conceive of the often boring, lonesome life that is felt by a handicapped person.

My life consisted of hardly anything but therapy and that was about all I had to look forward to. I loved the appointments with Teresa at the hospital, or with Henri or Mitzi who would come to the house. But when, for some reason, one of them would have to break the appointment I would be so-o disappointed, so blue and depressed. It meant I would have nothing to do the whole day and that I would be so bored. It meant, because I knew from past experienced that the hours.... would.... drag.... by.... ever....
so.... s1ow1y.......................and I.......would have......
nothing to do.

Wednesday, February 13, 2008

Occupational Therapy


I don't remember just when I started occupational therapy with Mitzi W, but I do remember a number of times falling back on my bed pillows, exhausted, from just trying so hard to make the muscles in my fingers move….but try as I may, they wouldn't.

In time, I could raise my arm about shoulder height and was able to use my fingers well enough to pick up cough drops by the little paper wrapping with my index finger and thumb.

I remember the time when I first was able to clap normally.....to

use both hands.....instead of just beating on a flat surface, or beating on my leg in order to make the clapping sound. And then when I could first cup my right hand enough to help rinse my face.....instead of trying to rinse with just one hand.

My experience….

How does it feel to be paralyzed?

Hand & Fingers - Feels like rubber bands around hand & fingers that prevents them from being able to move.feels heavy. Feels dead. Not a part of my alive body. Colder than other hand. Very little feeling when touched. Can't tell whether I have moved it or not; have to look to see.

Arm - Numb & heavy. Feels like rubber bands around. Colder than other arm. When trying to play tennis the arm bounces around and won't stay put so I stick it in the elastic of my pants to hold it.

As far as balance is concerned, it's like having just one arm.

Mouth -Feels funny when touched and can't tell quite where. Feels numb. Feels swollen, bigger than other side but doesn't look that way.

Can't eat a carrot, apple, corn on cab, etc.
Will bite lip while eating.

Leg - So tiring. Feels heavy.

Can't feel what position it's in until you look & see .

Tuesday, February 12, 2008

PHYSICAL THERAPY

By this time, my leg had gotten well from the Phlebitis and I could at last say “Goodbye'' to those tight, white, support hose and Jack would no longer have to line up nurses to give me the Heparin shots. I was making progress. I could now start physical therapy at our Orangeburg hospital.
Jack would drive me to the hospital and then stay the hour to learn from Teresa G what exercises I was to do at home.

-Push arm out.
-Back to side.
-Elbow to stomach....

Most of the time I couldn't comprehend what was being said but even if I had, I couldn't have remembered the exercises two minutes. I didn't at all mind doing the exercises because I had always been an active person, but it was no fun now since I couldn't count well enough to keep track of how many I had done plus my muscles wouldn't do what I wanted them to.
The paralyzed muscles in my right arm made my arm feel heavy and would hardly work at all. My whole arm felt like many, many strong rubber bands all up and down my arm were restricting all the muscles from moving. I would have to muster up all the strength I had to work against the rubber bands...........against the paralyzed muscles.

My right leg muscles made my leg feel as though I were ''trying to run through wafer's”, as Patricia N so ably expressed it in her book As I Am. There was no physical pain.... but just the pain of knowing that the muscles wouldn't do what I told them to do. They just wouldn't work. That's paralysis.

MY SPEECH NOW


Apraxia of speech - a motor/speech disorder which makes voluntary/spontaneous speech difficult in that to speak correctly requires motor planning.

Example: I have to depend on being able to hear myself when I speak (auditory feedback) for my motor planning. I have to be able to hear my own voice as I speak which provides me with the auditory feedback as I hear myself speaking. It is necessary to hear myself speaking in order to be able to think (motorically plan out) what I need to say next. The difference between you and me is that now I have to think about how to pronounce the words. Then I can perform the motor act of consciously saying it.

Therefore, I can't think how to speak when another person is talking or when there is a lot of background noise such as loud TV, or a crowded restaurant, or noisy party. They all continue to be a distraction to my thinking ability. In fact, I couldn't get my telephone number to come to mind when signing our church register, just because our preacher was preaching his sermon.

At times I might say ''No'' when I mean to say “Yes'' or vice-versa.

But when I hear myself make the mistake (by auditory feedback) I can catch myself and quickly change my response. I am dependent now on having to be able to hear myself as I speak without noise interference.

As I became more confident in my speaking I began enjoying communicating, one-to-one, with one other person, but I was at such a disadvantage trying to talk with more than one that I let myself be shut out of the conversation and would just remain quiet. That's no fun though, not being able to share myself or my thoughts to add to the conversation.

It's still an effort to try to explain things to others, even though I know what I want to say. I seem to not be able to find the words I need to make myself understood. In trying to communicate it always seems to help me if I can make eye contact with whomever I'm speaking.

Because of my speech, my paralysis, and my deficit, I was secretly pleased that most people knew of my second brain tumor.

Instead of having to be embarrassed if I failed, I felt that because of their knowing, people would understand.

Saturday, February 9, 2008

Speech Therapy: Reading & Counting


Henri started me with the simplest of exercises, Matching Beginning Sounds......more like child's play, but it wasn't that easy for me, even though I could get them all correct.

Then after that came recognizing words and pronouncing them, then using words in sentences and learning to spell them. I had to relearn the days of the week and the months of the year. At the same time I was learning to tell time again, to recognize numbers and be able to say them, to count, and to add, subtract, multiply and divide. It would be a poor speech time if I were tired or frustrated. I needed a nap every day.

It became my practice on car trips to read the numbers on a license plate as the car passed us, and to read signs on the sides of the highway while Jack drove along.

“Slippery when wet”,

“Ice on bridge”,

“Speed Limit 65”,

“Exit 119” (some signs had both words and numbers).

When I would take my recuperative walks on the golf course, I would practice counting to myself in rhythm with my steps: 26, 27 28, 29........ but I would have to pause while I tried to think what came next. Finally, I would think of 30.......31, 32, 33, 34, 35, 36, 37, 38, 39....... and again my thinking would be so slow. I would walk many steps while trying to think of 40. And I had to go through the same with 50, 60, 70, 80, 90.

I wanted so badly to be able to read to my grandchildren. They were only children; they wouldn't care about my speaking being not perfect. So they chose one of their favorite little books, My Little Red Bicycle and we cuddled up on the sofa together. I found I couldn't read with any expression in my voice because I was having such a hard time just trying to read the word itself and my words were so dragged out I was not able to hold their interest. They soon got restless and one by one they climbed down. I ended up on the sofa by myself.

Friday, February 1, 2008

SPEECH THERAPY for Aphasia

SPEECH THERAPY

It's something I took for granted.
I used it every day.
If I had a thought or an idea
I could open my mouth and say, “….
Now speaking doesn't come easy,
And I can understand why
I get so frustrated and embarrassed,
‘Cause on my speech I can't rely.


At Eleanor's insistence and my reluctance, Eleanor slowly walked me out from my bedroom to the table in our family room where she introduced me to my speech therapist, Henri C. We all sat down. Immediately my lower lip started quivering in my apprehension of what would be expected of me. I couldn't talk! And I didn't feel good....... and I didn't want to be there. Henri chatted a little to help me feel more comfortable with her while my eyes filled up with tears. Before long I was weeping and the session had to end. I was embarrassed. And the whole experience was very frustrating to me.

But the frustration and weeping didn’t last long. At the next session Henri and I became fast friends. She recognized that I had become aphasic and apraxic of speech in the removal of the tumor that was pressing against the speech area of my brain.

Aphasia of speech - the impairment or loss of the ability to communicate through speech or written language due to dysfunction of brain centers.
This caused:

(1) Loss of memory for words.
Example: when I tried to think how to tell the nurse I wanted the bedpan.

(2) the inability to name objects and people.
Example: when I couldn't even think of the names of my two daughters when they visited me in ICU. I finally got where I could remember the names of Julie? Sally? John, Jack but it was months before I could think of Eleanor's name.

(3)The inability to understand the spoken word.
Example: when Harvey A and Sally M came in ICU to visit me.

(4)The inability to understand the written word.
Example: when Eleanor wanted me to read the Get-Well cards and I couldn't read.