I SURVIVED BRAIN CANCER - Kathy Malone

My life changed on Saturday, February 19, 1994. I had gone to the chiropractor and then had an appointment to get my hair permed. Since I was early and had a few minutes, I drove across the street to use an outside pay phone. I wanted to call my dentist to let him know that the chiropractor had relieved the numbness on the left side of my face. He had thought it might have been Bells Palsy. The noise of the traffic made it very difficult to hear, so I drove back across the street to find an inside phone. A gym in the strip mall was kind enough to let me use their phone. As I tried to speak to the dentist, the words would not come out. I could hear him repeating my name over and over, yet I could not speak. I passed out.

The next thing that I remember was the paramedic's hovering over me. I must have hit my head when I fell because it was throbbing and really hurt. I had been unconscious for about 20 minutes. They asked me numerous questions. I had some difficulty remembering, but was able to recall most of what happened. They determined that I had some type of seizure and rushed me to the hospital. I kept wondering what had happened. I felt normal now, the same old me. What would I tell my family?

Once in the emergency room, I had a CAT scan and an enhanced CAT scan. The ER physician decided to admit me to the telemetry unit because the scan showed a mass and further testing needed to be done. I had a series of tests on Monday morning; EEG, ultra sound, and various other blood tests. On Tuesday, I had a MRI. At 9 a.m., on Wednesday, my surgeon had the results from the MRI. I had a mass in the left frontal lobe, 4x3x2 cm. I went into shock. There I was staring at my brain. I was convinced that an infection from a tooth pulled two weeks ago was the cause of the problem. What was going to happen to me? I looked to God for some answers.

My family arrived during the worst snowstorm that winter. I could not imagine what they were thinking. I was the one who was always there in a crisis and now my family had to be there for me. I hated to put them through all of this. I prayed, "God, I put my life in your hands, do with me what you will." I knew God would be with me all the way! My faith would carry me through.

The surgery was scheduled for Thursday, February 24, 1994, only six days after being admitted. The neurosurgeon used a microscope and the naked eye to remove the tumor, because he did not know what the mass was at the time. He removed the entire tumor that he could see. I felt fine after the surgery. Aside from a shaved bang area on my head and an "S" shaped incision from my left ear 2/3 of the way across my head, it was like nothing ever happened. I could walk, talk, and most of all think.

The hospital and two other independent hospitals interpreted slides of the tumor. The pathology report came back on March 1, 1994. The diagnosis was a malignant primary oligodendroglioma grade II. It was cancer; the big "C". I started to cry. The oncologist offered two treatment options, radiation or chemotherapy. His recommendation was radiation therapy. A new technique was available called 3D radiation. He would check to see if I was a candidate for this treatment. On March 4, 1994, I was discharged from the hospital and went home to await his call.

I could not look at my head. I wanted to remember how I used to look. I used to have shoulder length hair. I could not picture myself with a baldhead and a scar. I had no desire to look in a mirror.

On St. Patrick's Day, I was up at Mayo Clinic. My oncologist said that this would be the best place for me to learn about my treatment options. I spoke with one doctor about chemotherapy. I had a MRI at noon. I met with a radiation doctor and for eighty minutes as he explained about the 3D-radiation process. He was so easy to talk to that I knew my choice would be 3D radiation. He told me that the surgeon had only removed 60% of the tumor. The rest of the tumor was imbedded in my brain where tumor tissue could not be distinguished from brain tissue. I was in shock. There was 40% left. I sobbed.

One week later I was back at Mayo Clinic to begin preparation for 71/2 weeks of 3D radiation. My first appointment was for a simulation. That is where a radiation mask is made. The mask is used to anchor my head to the table during the radiation process. The technicians took a heavy piece of plastic with pencil size holes and warmed it in hot water so it could be stretched across my face. The plastic became thinner and the holes larger as it was formed to fit my face. It reminded me of a "JASON" mask. They put tattoo marks at my temples and a mark on the mask at the middle of my forehead for alignment purposes.

My treatments began on April 6, 1994. I prayed to God, to thank Him for the wonderful treatment I was about to receive. There were four technicians to assist with the procedure. I was placed on the table with the back of my head in a plexiglass mold. Once I was comfortable, my "JASON" mask was fit firmly over my face and secured to the table to help keep my head in the proper position. The tattoos on my temples and the mark on the mask were used to accurately align my head with the red laser beams coming out of the wall. That process insured that the radiation was on target each time. Once the technicians left the room and treatment began, I prayed for the ability to keep my head still. They performed a total of five beams of radiation on me. The whole process takes about 30 minutes. I had a total of thirty-six treatments over my 7½-week stay.

Upon my discharge, I was referred to a neurologist in Evanston, Illinois. He prescribed anti-seizure medication and put me on a four month MRI schedule. I started back to work part time on June 13, 1994. During this time I had pain behind my eye, nausea, and a poor sense of balance. I also had occasional headaches and slept a lot. I prayed more and more about my health. I would accept what the Lord has in store for me. It must have been an answer to prayer because I went back to work full time on August 9th.

The month of September was very difficult. While at a restaurant-club with friends, I had a seizure as soon as the band started playing and the strobe lights went on. I was taken to the emergency room by ambulance. I was fully conscious, but was trembling and could not speak. A call was made to doctor and my medication levels were adjusted. I could be released after all had calmed down. Ten days later I was at a company function and was presented with an award. At a reception following the award, I began to feel a seizure coming on. I had the seizure in the parking lot and was again rushed to the hospital. I prayed that God would give me peace.

My medication made me sleep quite often. I had bad headaches and my eyes were very sensitive to light. The doctor tried to adjust the medication to appropriate levels. I found out I had difficulty listening to many conversations when several people were talking. I learned that I was at more risk of seizure if I was tired. My doctor suggested that possibly my nodes were swelling and dying repeatedly causing seizures. I continued to experience blurring of the eyes and loss of equilibrium. The doctor felt it was drug interaction. I had moments of stuttering, loss of finding the words to say, or not being able to speak. This was attributed to the trauma my brain has experienced or being overly tired.

In October 1994, I had another seizure and scheduled MRI. My seizure medication was changed and I was unable to work. In November and December, my seizures seemed to increase in intensity and frequency. After getting them under control, I started back to work part time in March. By the middle of May, I began having several mini-seizures. I could feel the pressure inside my head. Okay what was happening? Is this a test of my faith?

In June 1995, I had my four-month MRI. My neurologist told me that the tumor was back. My cancer had grown back and was bigger than the original tumor. He recommended starting chemotherapy immediately. He and his staff had even decided what protocol I would be on. It was too much for me to comprehend. I was in shock.

My head was spinning. Everything was happening so fast! I was not convinced of the doctor's findings. My gut feeling told me that chemotherapy was not the right approach. I needed to make a decision quickly. I consulted my first surgeon to get a second opinion. He looked at the films and recommended stereotatic surgery at the Mayo Clinic. Two doctors two different opinions! Stunned and confused, I decided to call my Mayo radiologist. I respected his opinion. He said it was impossible to just look at the MRI scan and determine there is a recurrence of a tumor. A surgical procedure to remove the tumor would allow us to know what was going on and whether it was tumor re-growth or radiation damaged tissue called radiation neurosis.

On May 24, 1995, I went to Mayo to speak with two surgeons who were referred by my radiologist. The first doctor would not operate on me; he would only do a biopsy. I could not believe it. I thought, why get a biopsy? I need the rest of the tumor out of there. I was so upset, that when I got back to my hotel I had another seizure. I couldn't believe it. After 4 days I met with the other doctor and he agreed to operate. No biopsy, he would do a total resection using the sterotatic method. I had read an article about sterotatic surgery and decided to proceed.

My surgery took place in June 1995. The surgeon decided against a per-operative biopsy because the location of my tumor was too flat and they could not get a good biopsy result. The first preparation was to be fitted with a metal head frame that allows special attachments to collect coded information. This information was entered into a surgical computer to help create a three dimensional picture of my brain. The main test used was computerized magnetic resonance imaging, which distinguishes normal tissue from abnormal tissue. The surgery went as scheduled the next day. The surgeons and their team successfully removed the radiation scar tissue and all of the remaining tumor. Thank God!

I thought the worst was over. For the next 24 hours I was unconscious. I experienced shaking, tremors and mild seizures. The tremors persisted and the doctors felt something was wrong. After numerous Cat Scans, they found I had developed a blood clot forward and above the surgical site. I had emergency surgery to do another craniotomy and enter my skull at another point. Because of the location of the blood clot, the surgeon had to make the incision longer. The third surgery appeared successful, but it resulted in right side paralysis.

I spent a week in ICU and two weeks in the neurological ward recovering. Even though I was paralyzed, I knew God was by my side. I began inpatient rehabilitation on June 25, 1995. An orderly came to my room with a wheelchair and took me to therapy. The Lord was with me all the time, watching over me especially through the toughest times and believe me it was difficult. I felt comfort in His presence. After seven days, I moved to the rehabilitation ward and started in hospital rehab. Within seven days and with God's help, I was able to take my first steps. Not only did I have Physical therapy to help me walk, I also had occupational and Speech therapy.

In the beginning, I could not do anything and it left me very frustrated. As I look back on it, I got strength from God. The surgeon said my face drooped and when he came back from a week of vacation it was fine. I recall going to my first therapy in a wheelchair with my eyes closed because the medication left me with rolling vision. I remember in speech therapy that I could not name three trees. I can also recall when I could finally walk and kind of talk but could not use my right arm. The therapist told me to walk faster and that would make my arm swing. I was a miracle. I could go on with the little miracles that He gave me however, I knew he had much more in store for me.

My doctors and therapists discharged me from Mayo Clinic on July 12, 1995, with a plan for me to continue in Illinois. Five days later my therapy resumed. I went three times a week for three months. With a clean MRI in September, my neurologist gave me permission to drive. After three months of rehab, I did not feel I was getting better and still had some deficits. My doctor recommended starting rehabilitation in Chicago. I spent another three months there as an outpatient.

It was a long road to recovery. In fact, if you looked at me you would think I was normal. However I had three brain surgeries in sixteen months. I had trouble with word recall and manual dexterity. Neuropsychological tests revealed permanent deficits in the areas of speaking, recall, memory, reading, spelling, and math. My doctor said I am unable to go back to work. I was disappointed especially since I just graduated from college 9 months before all this happened. However the doctors knew what was best. I am leaving my health in God's hands. He performed a miracle in my life. I am alive and I thank Him every day.