Complications from the Skull Replacement Plate

About a month later, because I was unable to see the top of my head in the mirror, I asked my daughter Sally, who is a nurse (on one of her many visits home to be of help to me) to please look at the incision and see why it continued to itch. She took a long look at my scalp....... and then told me she could see the plate.

She scrutinized the incision further and saw that it was oozing.

It hadn't healed. Evidently, some stitches had popped loose making it possible for Sally to see the underlying plate. So, back to the hospital again to restitch my scalp. But due to the scarred tissue left from the removal of the first brain tumors the scarred tissue left from the removal of the second brain tumor and scarred tissue from the plate just put in, it was terribly hard to pull the two sides of the incision back together. The surgeons had not been able to catch but one of the layers of skin.... which leaves a hole in my scalp.

Emotions Resulting from My Brain Tumor

I had no confidence in myself now....
no self-esteem or sense of self-worth.
I didn't seem to “fit in” anywhere, anymore. I was slow; normal, busy people were fast and I was not able to keep up.

Self-esteem is a self-reinforcing characteristic. When we have confidence in our ability to think and act effectively, we can persevere when faced with life's challenges.

Talk by normal, busy people seemed frivolous and unimportant to me now. I was fighting to get my normalcy back while others were conversing about what to serve at a bridal luncheon or what color fingernail polish was that? I was struggling to be normal again and didn't know from day to day whether I would ever be able to speak right or able to use my right arm and hand again.

I was so insecure I hated for Jack to leave me and I felt like he left me so often to go play tennis... He would play at night and most every Sunday afternoon whether he had planned something for us to do together or not. If anybody called, he would leave me, so disappointed, and head out the door with tennis racket in hand. He couldn't understand why I couldn't be more flexible as he would say. The solution, in my disappointed mind, was to never plan anything to do ahead of time.

When he played tennis at night I was frightened. Suppose somebody were to come to the door! Because of the set back I felt so helpless. If only one of the children lived at home, I'm sure I wouldn't be so lonesome. But they all lived away. It was so quiet..............at night............................by myself.

I was totally dependent on Jack and was afraid I might lose him, to either another woman or to his tennis or to whatever he might desire more than coming home to me. I knew I couldn't compete with anybody or anything or any situation; I had no fight left in me. I was pitiful... like a wounded little puppy dog. He might very well find something more exciting than to come home to me.

I felt a hurt go through my heart. Many a night I would cry myself to sleep.
It is hard for a busy person to comprehend how one feels who has nothing to do. I had nothing to do because I could do nothing....nothing with which to keep myself busy...nothing to be interested in...nothing to make my life feel worthwhile....nothing to give a sense of accomplishment or meaning.

I was so bored... until Julie brought me the stand for counted cross-stitching. Then I would sit by the hour and try to count and stitch until I had made twenty little Christmas tree ornaments to give to my friends.

For a normal person the brain is the seat of consciousness, thought, memory, reason, judgments AND emotion. But there I was, incapable of thinking and was overloaded with emotion……..

CHALLENGE and GOAL

Before I found the second tumor, I had been a very active person playing tennis maybe three times a week, being treasurer of the St. Andrews United Methodist Women and treasurer for the church cookbooks, singing in our church choir and busy drawing floor plans for Jack's and my new house. We finished the house, moved in July 4, 1982 and Jack and I were doing our own house and yard work. But, now, everything was different. My world had turned up-side-down, and I was on the bottom side.

My first challenge was to get well and get to feeling good again.
And my ultimate goal was to return to the useful, meaningful, normal life I had had before. I wanted, so badly to be able to play tennis again. So badly to be able to lead a normal life! I surely didn't want to have to be dependent on others for the rest of my life, for my family's sake and certainly for mine.
I hadn't realized the ''parts of me not working right” would not be working right for such a long time. I remember asking my daughter, Eleanor, in my special way of talking, how long she thought it would take me to get back to normal. (1 was thinking in terms of months.) She kind of shrugged her shouldered meaning she didn't know, but thinking it would be an awfully long time. She could tell.

The challenge and my goal were the only things that mattered in my life now. I, not being able to think very well, thought of little else. GET WELL! GET BACK TO NORMAL! It was my one and only motivation and was of paramount importance to me. My family and friends had encouragingly told me they were sure I could do it, so I, wanting to believe them and wanting to live up to their expectations of me, believed I could...... not realizing that there was still that 15% chance of my speech and/or motor problem to be permanent.

Julie, my second daughter, provided my second big challenge when she bought me a stand to hold material for counted cross stitching to get me started learning to use my left hand. In my limited mental capacity, not only was I having trouble thinking, but definitely having trouble counting. But I tried hard and stuck with it, and soon I had that wonderful feeling of achievement, of productivity, of victory over mastering something.

It's so good, so important to have challenges for the handicapped so they can feel the pleasure of accomplishment, of progressing, of moving forward, instead of the boredom that sets in. But be careful not to make a challenge unreachable. Most of the time the handicapped person's life has been changed so completely and everything they had known and loved doing before is gone. But don't GIVE UP! You'd be surprised at what you and the Lord together might accomplish. Encouragement, too, is so necessary.
Make it sincere, no matter how small the progress.

After Surgery: Struggling with Speech Deficiency & Paralysis

I was having a lot of trouble trying to manage with only one hand and that one hand being my left. I had always been right-handed. And because I couldn't speak and couldn't ask for help, it seemed I was always needing it. When meals were brought to me I couldn't get started eating until someone was sent in to help me open the packets. There were so many! A packet with the eating utensils in it, a little packet of salt, one of pepper, of sugar, a little packet of butter, of jelly. I needed my carton of milk opened and the butter spread on my toast. If someone came to help me, I could eat. If nobody came, most of the food was wasted. I, for the first time, was experiencing how it was going to feel to be wholly dependent on someone else. And I didn't like the feeling!

I was embarrassed to buzz the hall nurse when I wanted to use the bedpan because, try as I may, I couldn't think how to tell her what I needed. Many times I just lay there, frantically trying to think what to say to her so she would understand. But I could not think of the word. My mind was just blank. I pondered, and tried again and again. Then finally....finally, I thought of ''Pee Pee” the name Mother used when I was a little girl. So with great anticipation, I buzzed...............and waited...............and waited for the nurses station to answer....... Then by this time I would have forgotten the word I had finally thought of to say. I couldn't hold the word in my mind. (Even now in trying to write this story words don't come easily. I have been rewording and rewriting it time and time again for many years. Everytime I read it, I find that I am no longer satisfied with the way it sounds, so I rewrite it. I wonder if I will ever finish it!)

When I was finally told that from now on I could get up and go to the bathroom by myself, I felt that my woes were over. I would no longer have to buzz the nurse’s station and suffer the embarrassment of not being able to tell her what I needed. But I was soon to find out I had a problem equally as bad. To go to the bathroom by myself I would have to hold, with my one usable left hand, the sack that the incision drained into in order to keep the weight of the sack from pulling on the drain tube which in turn would tug at the bulky dressing and would rub painfully against the raw incision. So with the sack in my left hand and the right arm paralyzed, I had no way to tend to my toilet needs.

I Couldn't Speak! after My Surgery

Very soon after my surgery, two of my daughters, Eleanor and Julie, visited me.

Eleanor’s notes describing their visit:

"Thurs. 5:30 PM after surgery – (Julie was with me )
Mother awake and very alert. Paralysis of both limbs on right side. IV in hand. Tube with blood drainage from gauze wrap around head running into sack. Urinary catheter running into another sack. Right lip drooping over teeth. Mother very responsive. No speech. Auditory comprehension for slow, simple speech. No articulation in mouth. Seemed aware of paralysis."

Physicians’ Reports Preceding Brain Surgery

Physicians’ Reports – Sally Spends The Night

Neither did I know Eleanor was taking notes on what the physicians were reporting to her in private about my condition.

Tuesday – Dr. Dial

Risk of surgery – Greater this time than for the first brain tumor due to location and scarred tissue. Risk is damage to right side, anywhere from paralysis to poor muscle tone.

Lengthy surgery – Getting to it is easy. Excising it is hard. Surgery will be a lot longer. The longer it is the more chance of problems. Tumor is in the skull. Will require plate on whole left hemisphere. More concerned than at first. Probably after surgery will have speech and motor problems. He expects this.

Seizures – Frontal-temporal meningioma might cause seizures.

Tuesday afternoon – Dr. Paysinger

Expects speech problem and weakness or paralysis after surgery. Said Mama might not make it through the surgery. About 15% chance of speech and/or motor problem will be permanent. Probably plate on most of left hemisphere. He will operate Thursday morning.

It was thought I would be in the hospital for about a week, like with the first brain tumor, so plans were being made for Julie to come with her ten months old baby boy, Lane, when I got home from the hospital and stay with me while I was getting my strength back. I expected nothing but that my recovery would be like that of my first tumor… quick and complete.

I had asked my daughter, Sally, who is a registered nurse, to please come st ay with me the night before I was to have my surgery. I thought I might need her in the nurse capacity but I knew for sure I would need her for support. She and I slept very well that night until the hall nurse came in and woke us up about 5 AM Thursday morning to “get up and start getting into the surgical gown in order to be ready for surgery”. I wanted so badly to have my little cross, that I had been carrying in my wallet for years, to be somewhere on my person during the surgery… but where could we hide it? I had been stripped of all jewelry and was jut about naked in that scrimpy little, split-down-the-back, short, no-modesty-at-all, surgical gown. Sally and I looked at me. Then we looked at each other. And then she made a real good suggestion… so, when the hall nurse came back about 6 o’clock to see if we were ready, my little cross was hidden, securely tucked long ways under my hospital bracelet and hardly even showed.

I, having already been sedated, was no sooner rolled out of the room on a stretcher than I was fast asleep. I didn’t know anything after that, not even when somebody shaved my head for the operation.

Tumor in the Speech Area

Each of our four children needed to be informed of my condition, a suspected second brain tumor. Three out of the four could come home Saturday.

Saturday was a gorgeous, warm February day and the whole family was sitting outside talking and sunning in the courtyard behind our house when Claire B. came over from next door. She and I chatted a little while, then she told me she had heard the news and that she was so very sorry.

Jack drove me up to Columbia the next day, Sunday, February 20, 1983, the day before my 55^th birthday, to admit me to the Richland Memorial Hospital. I was to have the same neurosurgeon, Dr. Danny Paysinger, in whom I had grown to have great confidence.

Mary Ann R and Joan M drove up to Columbia Sunday afternoon to visit me and Carlos G, minister at St. Andrews, came also. According to Eleanor’s notes that she jotted down all during my stay in the hospital Sara S, Donna R and Nancy A called later. Nancy told Eleanor that she had noticed Ashlyn being put out with Jack. That they had fussed regarding her tennis. …What happened was that about a week before I found the tumor, Jack was out riding his bicycle while I played tennis with the girls. He decided to ride by the tennis courts and then stopped to watch us play. I was very conscious of his being there watching and then proceeded to miss four consecutive shots. When I got home he had plenty to say about my poor tennis playing… Nancy was questioning in hindsight, “why Jack hadn’t noticed at tennis that something was wrong!”

After having an arteriogram on Monday, it was determined that the tumor was on the “speech area” of my brain. I can imagine how this must have affected Eleanor, she being a Speech Pathologist in Summerville, SC herself. She would better understand and, maybe, know too much about the ramification of the tumor being on this area. I hadn’t thought to ask, so I didn’t know where the tumor was.

Something Abnormal

Months later Claire B, my interior decorator and next door neighbor, and I were standing, in what was to become the guest wing of our new house, discussing which wallpaper to use in the guest bedroom when I began to feel real dizzy and felt like I was going to faint. There was nowhere to sit down so I just leaned my back against an unfinished upright and sank to the floor to a squatting position. Soo the dizziness passed away. I called the doctor the next morning and told him about my dizzy spell so he called in a prescription for Anti-Vert from the pharmacy and this seemed to take care of the problem. But little did I realize how much lay ahead of me.

At another time, Jack noticed that I was having trouble understanding some things that I normally would have been able to understand easily. AS we look back over it now, he didn’t know about my dizzy spell and I didn’t know I was having trouble understanding, so neither of us suspected anything. We were so busy trying to finish up the new house.

Finally, we moved in July 4, 1982. We got the boxes unpacked, the books on the bookshelves and the pictures hung. We were having such a good time entertaining our friends in our new house… a church choir supper, a party for our tennis group, my church circle, our supper club, etc.

Eleanor came for Christmas, 1982 and she noticed that I was having a problem with my memory. I brushed it aside with, “I don’t think anything could be wrong with me; I feel too good… and it’s been nearly nine years since I had the brain tumor. And, too,” I argued, “we were told that it would be most unlikely for me to ever have another one.”

But, after about two months, I woke up three consecutive mornings with bad headaches that seemed to not want to go away. I started putting two and two together and realized that I was feeling more tired than usual and my tennis game was not up to par… and that dizzy spell! I knew, since we now had a CT scanner in our Orangeburg Hospital, I should go have a scan made.

My appointment was Friday, February 18, 1983. Jack and I had no sooner walked in the door from the hospital than our family physician called. We, Jack on one telephone and I on another, we were told that “something abnormal showed up on the scan! It was big! And in that same general area as the first brain tumor”. I felt numb… I could hardly take in what I was hearing. I was to be admitted to the Richland Memorial Hospital in Columbia by two o’clock Sunday afternoon. Jack was to pick up the CT Scans from our Orangeburg Hospital to take up to the Richland Memorial Hospital for consultation.

Julie’s Marriage

Dr. Paysinger dismissed me, September 6, 1975, as my last post-operative appointment for I was “doing exceedingly well” and had, when tested, no sensory or motor deficit. I was playing a lot of tennis, doing most of my house and yard work, and feeling great!

Julie and Tim S. were married May 29, 1976, right after Julie’s graduation from college, and I, at last, got to wear my “mother-of-the-bride gown with shoes dyed to match”!

The bridal luncheon had been given earlier that day by Jack’s mother, Julie’s grandmother, and as a thank-you for being in her wedding, Julie took this opportunity to give each of her bridesmaids a little gift. When a small package was handed to me also, I was taken aback and very surprised. This must be a mistake! I was not a bridesmaid! In my bewilderment, I opened the gift… four little gold beads on a gold chain… with this message inside:

This is to celebrate
The miracle of your recovery.
These 4 beads represent
The love from your 4
Children. We appreciate
All you’ve given.
Love,
Julie

Four little beads… my four precious children…
exactly two years since the brain tumor. I immediately loved the gift… and wear the little necklace all the time. It has become a part of me. I will treasure it always. I knew this was to be Julie’s “special time” with her wedding, but I was finding it to be a very “special time” for me, also. It was hard to hold back the tears.

Rare Tumor? WRONG!

Somewhere along the line Jack and I were told that the kind of tumor I had was very rare and were given the impression that I would never have another one. Our Orangeburg Hospital had no CT scanner at this time anyway, so we dismissed it from our minds.

Jesus – Lord Over My Convalescence

“I’m scared to death to get up here before the congregation like this, but I just couldn’t miss the opportunity to thank all y’all for your many kindnesses and to thank my Lord for His healing. I love Him so and want so much to please Him. I pray this will be to his glory.

“Many of you know about my past experience of having a brain tumor removed May 30, 1974. It all started back in the fall of 1973 when I began suffering, off and on, from what I thought to be depression…” and then I went on and told them about the nine shock treatments, the removal of the brain tumor and having to miss Eleanor’s wedding. I reminded them that “some of you, while I was in the hospital, brought food to our house on a regular basis and continued to do so even when I returned home. Others of you came by and helped Eleanor with her wedding plans. Some even put up shelves and covered them with white material in order to display the wedding gifts. What an outpouring of love and concern! I know God comes to people through other people, and I thank you so much for letting our Lord use you… to help take care of my family when we needed you so badly.

The Lord certainly is at work in
Your hearts and we praise him for the
Works of compassion He has performed
Through you.

“Your many visits, encouraging letters and cheerful cards, the beautiful flowers, your wonderful thoughtful gestures all meant so much to me. As Bennett B wrote in a later letter to Jack and me before he died with ALS, Lou Gehrig disease, ‘Blessed are those who find ways and words to comfort others.’

“2 Corinthians 1:3-4 in the Living Bible says, ‘What a wonderful God we have – He is the Father of our Lord Jesus Christ, the source of every mercy, and the one who so wonderfully comforts and strengthens us in our hardships and trials. And why does He do this? So that when others are troubled, needing our sympathy and encouragement, we can pass on to them the same help and comfort God has given us.’

“I’m so thankful for caring people who are willing to take time out of busy schedules to do for others. Thank you so much. But most of all, I thank you for your prayers. When Gerry P, our church secretary, received word Wednesday that I was scheduled to have brain surgery the next morning, she passed the word around by telephone and many friends (about 100 I’m told), came here to the Sanctuary while the operation was going on to offer prayers on my behalf. When I heard this I was so touched! You cannot know how good and how loved that made me feel. I thank you for each and every prayer that was prayed for me, for I know prayer makes a difference. In fact, I often think, what if nobody had prayed for me…?

I feel that our Lord uses (not causes, but uses or allows) these difficult times of sickness or troubles to help us grow spiritually, for it is in times like these that we realize how helpless and inadequate we are without Him, and learn quickly how very much we need Him. As I lay up there in my hospital bed in Columbia, I felt wholly dependency on Him. I was completely in His hands. He held my future. Fear not, I, the Lord, am in control. I felt His nearness, and His love like I had never experienced it before. I felt a peace and a feel of being ‘taken care of’, a feeling of being ‘wrapped in His love’. It was so wonderful!

“I don’t know why it is that we sometimes have to almost lose something before we can really appreciate it. And I do, more than ever before, appreciate and am thankful for my life and for each day the Lord gives me to live in this beautiful world He has made for us. “I love to begin my day by looking out the window at the warm sunshine, or listening to a bird’s song and envisioning God out there and saying to Him:

Good morning, Lord,
This is Your day.
I am Your child,
Show me Your way.

Or sometimes say: This is the day that You, Lord, have made.
I will rejoice and be glad in it.

“I am trying real hard, for my family’s sake, to be a new and better Ashlyn rather than the old, depressed Ashlyn I was. Now Jack says he has a new wife! And then, I say ‘I have a new life’.

Could we bow in prayer please:

“I thank You, Lord, for this day. I thank You for these wonderful friends, who have let You work through them on my behalf. I thank You for my precious family… and for the privilege of coming to You in prayer. I utter this in Jesus’ name. Amen”.

I was so in love with my Lord!

Strange!

I was released from the hospital the next Friday, June 7, after just eight days. Jack came up to drive me home to Orangeburg, but…

Before we left Columbia, Jack bought me two pleated turbans, one pink and one white, to wear on my bald head. They were soft like the little stocking cap I was given at the hospital after the dressing was removed. I found the turban much more comfortable to wear than my wig which tended to be scratchy against the raw incision.

When we arrived at home in Orangeburg, something very strange happened. When I opened my closet door, none of the clothes hanging in the closet looked familiar! It looked to me as if all my clothes had been removed and replaced with some clothes I had never seen before. Then shortly I was able to remember them.

Strange!

And later, when I was told I had made those red burlap flowers as part of my therapy while having the shock treatments at the Baptist Hospital, I could hardly believe my eyes. As I scrutinized the flowers I had absolutely no recollection, at all, of having seen them… much less having made them.

Strange!

It was a disturbing feeling, knowing that I hadn’t known, for this long period of time, what was going on… or what I had done or said. I reckon it’s the way a drunk feels when he’s told the many things he said and did while he was drunk.

Brain Scan and Neurosurgical Evaluation

Brain Scan

Monday morning May 27, 1974 at the Baptist Hospital, I was given a CT (computerized tomography) Brain Scan to determine whether I did, indeed, have a tumor. The scan showed I did… a large frontal lobe tumor on the left side of my head. The shock treatments had been so unnecessary! So unneeded!

Neurosurgical Evaluation and Recommendations

Tuesday, May 28, a neurosurgical evaluation and recommendation were made. Dr. Danny Paysinger, a neurosurgeon, would perform the operation. When he examined me later he found: “The patient is very demented. She has a very short attention span with no memory or recall of the moment. She cannot handle figures and the examination is extremely difficult because of the patient’s inability to carry out instructions even of a simple nature”.

Then Wednesday, May 29, I was given an Arteriogram to determine more about the tumor. The location proved to be favorable; the tumor would be accessible.

Jack, in Orangeburg, was called immediately and his permission obtained for brain surgery. He was told I would be operated on the next morning and that he should come up to Columbia that afternoon and move me from the Baptist Hospital to the Richland Memorial Hospital where an operating room would be available at that time. So Jack and our middle daughter, Julie, drove up to Columbia that afternoon to move me and my things from one hospital to the other.

Pre-Senile or Brain Tumor

On Saturday May 25, 1974, a neurologist, Dr. Taber, was called to the Baptist Hospital to examine me. He wrote in a report about the examination, “In my opinion Mrs. Gray could have an organic disorder”.

Saturday night, May 25, in Orangeburg, my family was at a just-family (because of my condition)-bridal-supper given for Eleanor by friends at their home. Jack had been calling Columbia all day trying to get in touch with somebody who could give him a report on the neurologist’s examination. Finally Dr. Taber called Jack at our friends’ home and reported to Jack that, at this point, it was thought that I was either pre-senile or had a brain tumor!

O-O-O-O-Oh! Either would be terrible! We, our whole family, had known senility first-hand with Mother! …Or a brain tumor! O-O-Oh… No!! Either prognosis was awful!

(This was in 1974 and brain tumors weren’t prevalent like they seem to be today. We had never known anybody to have brain tumor! It was foreign to us… and very scary!)

These two possibilities faced my family this Saturday night… just one week before Eleanor’s wedding. She broke out in hives.

Something Needs To Be Done

I can hardly remember anything about my stay in the Baptist Hospital and nothing at all about the nine shock treatments. I don’t remember having made the “red burlap flowers” that seem to be a part of the therapy program for mental patients. Neither do I recall that Eleanor, on her 21^st birthday in May, which was about midway into the shock treatments, brought me a dozen daisies. What a sweet thing for her to do… (Now, wasn’t that special!) But, mentally, I was beyond being able to take anything in; I could hardly function.

I can’t remember much about anything after that first appointment with Dr. Huggins, nor remember the remainder of April and all of May because of being given the shock treatments. It wasn’t just a Lost Week-End, it was more like a lost two months.

Eleanor, at this time, was in Columbia taking a course at Columbia College before her graduation and her wedding. She would come faithfully to visit and check on me. It was not easy for her… seeing her mother going downhill each time she would come. She needed to be concentrating on her school work and her wedding… not having to worry about her Mama.

When she would come, she and I would usually take a little slow walk down the hall together. But this one time, Friday, May 24, I was having an especially hard time trying to walk. I was just hanging on to the side rail in the hall in order to move one foot in front of the other. As I moved slowly along, taking one step at a time, Eleanor noticed that something was terribly wrong; I was dragging my right foot! Nobody else seemed to have considered that something other than depression might be the cause of my trouble! And it had even been noted already that I had not been responding to the shock treatments in the usual way!

It seemed very doubtful now, as to whether or not the shock treatments, as Jack had been assured by Dr. Huggins, “would be the best thing for Ashlyn and she would be feeling much better in time for Eleanor’s wedding”.

When Eleanor got back to her college dormitory she called Jack to tell him what she had noticed and that something needs to be done!

Baptist Hospital

Monday, April 29, 1974 with Eleanor’s wedding just one month away I saw Dr. Huggins a third time. It had already been decided, without my knowledge, that I was to enter the Baptist Hospital in Columbia the next day, “now that my diagnosis of depression had been confirmed.” Jack, after having been assured that “it would be the best thing for Ashlyn and that she would be feeling much better in time for Eleanor’s wedding”, signed a paper giving his permission to go ahead with treatment.

So, I was admitted to the Baptist Hospital on Tuesday, April 30… not really knowing why or what was going on. Unable to think well enough to even question, I was just doing what I was told to do. I was led up to the ninth floor and through two big, heavy doors which slammed shut behind me. And I was locked in.