Surviving Brain Surgery
She is a redhead, filled with enthusiasm and a love of life. She was my neighbor in Virginia. Little did she ever dream that she would have that lovely red hair pulled back 5 inches from her forehead to her ears, to allow doctors to make an incision and remove a large brain tumor. This is her true story, written in her own words, to give encouragement to anyone facing a similar situation. It is not an easy story to tell, but one that should be passed on to those who may lack courage or have difficult decisions to make in this regard.
Looks Can Be Deceiving by Patricia Paige
“When we meet someone for the first time, we immediately become aware of their appearance. We notice their height, their hair or their eyes. One such example is found in First Samuel Chapter 16. When Saul had lost God’s favor to rule over Israel, He sent Samuel on a specific mission. He traveled to the home of Jesse, and from his sons, God told him he would find “the chosen one.”
As Samuel looked at Jesse’s older sons, he considered their height and strong features, but God rejected all of them. He told Samuel that God does not judge someone by their outward appearance. He looks upon the heart. Samuel sent for Jesse’s youngest son, David: “And, the Lord said, Arise, anoint him; for this is he.”
When you look at me, you might notice my red hair, my blue eyes or my smile. Sometimes, looks can be deceiving. What God knows, but you cannot see, is that in August 2014, I had surgery to remove a brain tumor.
I’ve had headaches most of my adult life, including migraines. I didn’t believe the headaches I’d been having for the past several months were any different. These headaches would always completely disappear. My journey began quite uneventfully on a beautiful day in June. When I’d awakened that morning, I’d felt really energetic. Except for this morning, my hearing was muffled. Have you ever been swimming underwater in a pool? You hear the voices and laughter, but the sounds seem diminished. I continued my busy day. After accomplishing a few errands, I’d purchased groceries, and prepared an early supper. However, throughout the entire day, my hearing remained muted.
After my husband and I had eaten, I’d filled a plate and popped on the travel lid. My purse and keys were on the counter. Suddenly, I felt nauseated and started having stomach cramps. Later, I would look back on this event and realize this was God’s divine intervention in my life. If these symptoms had not occurred exactly when they did, I’d have been driving down a four-lane highway.
Thankfully, I’d gone into the small half-bath near the kitchen. Nausea only worsened as did the stomach cramps. When my massive seizure began, I was close enough to the wall to lean my head against it. Honestly, I don’t believe I could have remained upright at this point. My next symptom was extremely bright, revolving lights. Have you ever been to a carnival where colored lights are pulsating and blinking in a circle?
I never lost consciousness, but believed my head was literally going to explode. Searing pain raged throughout my entire skill. On and on the cycle continued with nausea, severe cramping, blinking lights, and headache. Several times I thought I was going to die. It would have been a release from the excruciating pain. I am so thankful to my husband for placing cold, wet washcloths on my forehead and back of my neck.
Why, you ask, didn’t my husband call for an ambulance? My symptoms were waxing and waning, so we both assumed it would be over any minute. Besides, some of our friends had recently suffered a nasty stomach bug, which had included a severe headache. A similar illness perhaps? As suddenly as the symptoms had appeared, they disappeared. I felt completely normal again. I could walk and talk without any problems. My speech and balance were fine.
However, this experience troubled me. Were these symptoms of something more serious? I phoned the office of a neurologist I trusted and had known for several years. In the meantime, I went to my family physician. My vital signs were within the normal range. When I described this frightening incident, he expressed concern. I told him of my upcoming appointment with neurology. He was relieved I would be seeking additional medical treatment.
My headaches were becoming worse; occurring more frequently. The neurologist thought I was having “cluster headaches.” She also ordered an MRI (brain scan) to rule out anything else.
Returning home few days later, I had a phone message from the neurologist. She asked that I return to her office early Monday morning. This was Friday afternoon so I knew it wouldn’t be good news.
“You have a brain tumor” are words you never want to hear from your doctor. My suspicion had become all too real. I just sat there and didn’t respond. I was in shock. She asked if I’d heard what had been said. She asked again. I shook my head signifying I understood. I sat motionless; silent.
She showed us an x-ray of the tumor. It was a moderately large Meningioma. This type of tumor grows within the first three layers (the meninges) that are located between the skull and the brain. Although they are usually benign, I would require surgery to remove it. When she asked where I wanted to go to, I asked, “Where would you send someone in your own family?” That’s how I was referred to the Chief of Neurology at a hospital accredited as a Level I Trauma Center.
The next few days were a blur. My headaches were more intense, and I was increasingly sensitive to bright lights. I’d wear my sunglasses even indoors. My family continued to be supportive, encouraging and funny. Hey, look, our daughter would say, “Mom’s wearing sunglasses in the house. She must think she’s a Movie Star!”
The following information is taken from a Facebook post: “Last night, I read the pathology report on Mom’s tumor. It gave the exact measurements. I used a ruler, pen and paper and made a sketch. Then, using the materials at hand, I fashioned a replica of it using many, many rubber bands. If you’ve met my Mom, then you know that she’s a short, small-boned, cute, redheaded woman. What I’m trying to explain is that this tumor is HUGE! No wonder Mom is keeping a bad headache.”
Two MRI’s and two neurologists have now confirmed that this tumor is indeed a benign meningioma . Next week, I have an appointment with the doctor who will perform the surgery. With his guidance, we’ll formulate a plan.
The surgeon was very professional, yet more than willing to take the time to answer all our questions. In my prayer time, I’d made a request of God. I’d asked Him to put me in the hands of Christians during my surgery. No one, not even my family, knew about my request. On our way out of the office, one of the associates touched my shoulder. She said, “You’re going to be fine. I’ll be in the room during your surgery, and I’ll be praying for you.”
Relief! Precious, wonderful relief. We were in the hallway before I broke into tears. My husband hugged me and said, “It’s going to be okay.” I explained the petition I’d made earlier. This is God’s way of showing me, “He’s got this!”
We were told to check the surgery schedule as we exited the hospital. The doctor who’d be performing my procedure did not have an opening until the middle or latter part of September. This was the first week in August. Waiting several weeks seemed like a very long time. I remembered that Almighty God held me in the palm of His Hand, and I was at peace.
I was on a “prayer chain” at my home church as well as several others throughout our community. These Christians were asking for my healing, and for the grace to see my family through this journey.
My health continued to deteriorate. My painful headaches were even stronger, and my energy level was beginning to drain. By now, I was unable to accomplish even the simplest of household chores. I began noticing that my balance was affected. Most days, I walked like I’d been drinking. I’d hold on to walls and furniture to prevent myself from falling.
One day I received a phone call from the hospital. It had only been two weeks since my appointment. The woman on the phone worked with the neurosurgery scheduling department. She asked if I wanted to have my procedure performed on August 22. Talk about a no brain-er (excuse the pun!) Absolutely!
As my husband and I sat in the surgical waiting room, we were joined by our daughter, granddaughter and grandson. This was the quietest my family has ever been. Usually we’re talking, teasing and laughing.
A nurse came to take me back, and told my husband and daughter they could join me after I was prepped. The hugs with my grandchildren were bitter-sweet because of the seriousness and uncertainty of brain surgery. Of course, I didn’t want to leave my family, but I knew where I’d be spending eternity. And, this was incredibility comforting. My family sat beside my bed. None of us knew what to expect. We were in a holding pattern similar to an airplane waiting for take-off.
My surgeon joined us and inquired if we had questions. The anesthesiologist arrived and introduced himself. Did we have questions? He then asked if they could pray for us. I don’t remember the words he said, but I knew they were heartfelt. It was surreal. Never before have I been so grateful to be a Christian surrounded by other believers.
According to my daughter, my surgery went well. Because I’d bled more than expected, I’d received two units of whole blood. I’d be in recovery, then ICU for several hours, transfer to a room, and finally discharge. That was the plan. In life, things do not always go as we’d anticipated.
When I first became aware of my surroundings in ICU, I was unable to speak. For a woman who has been extremely verbal all of her life, this proved to be difficult. As the hours passed. I became increasingly angry. My anger was not directed at God. My distress was due to my circumstances. I remember clenching my fist into a ball and pounding it on the bed. This could not have been beneficial especially since this was the arm where the IV was attached. I began shaking inside and sobbing. Tears were running uncontrollably down my cheeks. None of the nurses could tell us why this was happening.
Later that night, our daughter phoned a friend who teaches speech therapy at the college level. She explained that my condition was called expressive aphasia. This occurs when there is a disconnect between the brain and the mouth. The words I was trying to express were simply stuck in my brain. Apparently, when the brain is touched, interesting things happen.This would improve with time.
My tumor had grown from the left side of my skull toward the right. In fact, it had wrapped around the large cranial nerve in the middle of my skull. Think of it like an octopus whose tentacle is holding on tight. While my surgeon was unable to completely remove this part of the tumor, he’d gotten into close proximity. My brain needed to rest and reboot.
Because I couldn’t speak, the nurses brought pad and pen and asked that I write down what I wanted to say. I held these items in my hands, but I couldn’t write words. All I could do was to make attached ovals in a solid row. Row after row after row. Finally, I stopped trying.
I spent two days in ICU before transferring to what they referred to as a “step down” room. I’d stay there for the remainder of the week. At this point, I’d transfer to an inpatient rehabilitation center near the hospital. This was an intensive 7 day a week program focused on physical, occupational, and speech therapy. In the beginning, each of these were challenging. I had deficits in all three areas.
Occupational therapy proved to be extremely difficult. When offered a child’s large-piece puzzle with wooden handles to grasp, I managed to put together only three pieces. Twice daily the therapist would encourage me to work with my hands to improve eye/hand coordination. Problem-solving skills slowly started to improve and were more consistent.
Physical therapy concentrated on regaining my equilibrium, muscle strength and stamina. At this point, I was using a walker with attached wheels. Therapy incorporated the use of large balance balls, safe places to walk for short distances, exercises and stairs with railings to prevent falls. We had all learned and mastered these skills in early childhood.
Obviously, speech would be problematic. It would take time not only to learn how to communicate, but how to lessen the disconnect in my brain. Because I’d always gestured with my hands when I talked, occupational therapy was the missing link in regaining my speech. These therapies would continue when I returned home.
During this entire time, my vision had been extremely blurred. It was like trying to visualize objects or people through a thick fog. I was also experiencing drowsiness and fatigue. I’d accepted these as side-effects of my surgery. Thankfully, they were not!
The high dosage of seizure medicine they were giving me to keep my brain calm was reacting negatively with a muscle relaxer. I’d used it to relieve muscle spasms due to Fibromyalgia. I had not taken this particular medication in over a year, and then only once or twice daily. However, my medical chart showed I was taking it three times daily. I explain this in detail as a precautionary tale for others. Review your medical records carefully with your primary care physician to correct any discrepancies before you are hospitalized. In any case, it is of utmost importance that your medical records are correct.
Arriving home, there were other obstacles. Patience has never been one of my strongest virtues especially when I’m in a hurry or stressed. It was difficult to remain calm, breathe slowly and deeply, then retrieve the actual word I wanted to express. Sometimes, I’d become angry and raise my voice. My poor husband was the target of all my see/saw emotions. Thankfully, he is a Godly man who really loves me. I’d say an entirely different word than the one I’d intended. Sometimes I’d just point to an object and call it a thing-e. Occasionally, this still happens.
When I first began my journey back to health, I did not realize it would take this long to recover or be so life-changing. These were the times that I found solace in the writings of Corrie Ten Boone: “When the train goes through a tunnel, and it gets dark, you don’t throw away your ticket and jump off. You sit still and trust the engineer.”
I’ve always had empathy for people with cerebral palsy or those who have had traumatic brain injuries or strokes. Until my experience with expressive aphasia, I did not fully understand how challenging it is for them to try to speak. Now I do. Those words and thoughts remain locked deep inside their brains. Every day, they ride on a roller coaster of emotions. These brave people endure disappointment, frustration, anxiety and depression.
As a believer, I did not expect my life to be any easier because of my profession of faith. I did trust in God’s promise to never leave me. He is faithful as we continue to walk together down this crooked path called life.
I accept that everything that comes into my life is allowed by a good God. Why does He choose to heal some people and not others? I can’t answer that question. He alone can see into the future. God already knew I’d have a brain tumor, surgery and difficult recovery. I believe He has a plan and a purpose for each of us. I’m using the miracle God granted me as a testimony. It is my desire to provide inspiration and encouragement for those facing a similar or other serious surgery.”
Note from Boyer Writes in 2017: God made a way for Patricia Paige to survive her brain surgery through prayer, family support and the medical team that skillfully brought her through to live a productive life. She is most grateful that the doctors understood her feminine concerns and left her red bangs to be brought forward so that people would not even notice that she had gone through such major surgery.
Whatever your challenges may be, give yourself to our Lord and ask Him to make a way for you to come through your difficult circumstances.
Boyer Writes footnote in 2019: Patricia Paige was a pen name for a lovely person whose real name is Wanda Robinson. She wrote about this part of her life a number of years ago. God made a way, through doctors and support of family and friends, for Wanda to have five more years of life. In 2019, she went to be with her Savior and Lord, Jesus Christ and her wonderfully supportive husband, Wade. It is in her honor that I re-post her writing.