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!

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.

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.

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.

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.

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.

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.