Born Anew

  At Forty-Two

 A Brain Tumor Story

In one of my earliest memories I am sitting on a bench that was built around a tree in our front yard, waiting for my sister and brother to come home from school. I wanted to attend school myself so badly. I would come fall. But first I had to have my last inoculation.

Mom drove us to the doctor’s office, which was in an old brick building. We walked up the steps into the front door and turned left into the reception area. The walls were a pale pea green color. The reception counter was blonde wood with a waxy coating and silver trim. After checking me in, mom and I sat in uncomfortable silver chairs while we waited.

When my name was called, I followed mom and the nurse out of the reception area, left down a hallway then right into an examination room. The walls in here were stark white, the floors black and white tile, furniture silver metal with red plastic seats, the same chairs that were in the reception area. An antiseptic smell permeated the room.

The nurse had me bend over the exam table and lift up my dress. After she was finished using my backside as a dart board, I made a vow to myself; when I grew up I was going to be a nurse someday and when I was, I would return to that place and give her a shot to pay her back for what she had done to me.

Twenty years later, I achieved my goal. Except I was a nurse in Sacred Heart Hospital and that nurse I vowed to pay back so long ago was no longer in my thoughts. Nursing was my life, what I lived and breathed for outside of my family.

I had lived my dream for two years, when I began having a constant stinging sensation in my low back. New Years day, 1999 I woke up to find my legs could barely carry me to the bathroom, every movement agonizing. Though it would be a few months before I realized it, my dream was shattered. MRI’s showed one our family’s hereditary diseases had me in its clutches. My spine was degenerating, discs bulging, and my hip joints would not remain seated in the socket where they belonged. It was a year and much physical therapy and hard work later before I could finally walk more than half a block again. I could still barely stand longer than fifteen minutes and I was unable to sit for even that length of time without excruciating pain. I was told to give up my nursing career; that I may not be able to work again.

I received social security disability for the next ten years, during which time I learned how to walk again, how much activity my body could tolerate without causing a severe flare up of back pain. I lost 60 pounds and began exercising. By 2002 I was ready to try the work world again.

I had given up my nursing dream, but I could not let go of medicine completely. In a medical office there is no heavy lifting and one can control the amount of sitting and standing they do. I was sure I could manage such a job, despite my continually degenerating spine.

 I enrolled in college and was hired at a medical office three months before graduation. I graduated with honors the summer of 2004 with an AAS degree and a certificate as a Medical Office Specialist.

My job as personal secretary for a cardiac MD was fulfilling, gratifying and also exhausting. It was a high stress environment. There were five phone lines going to my desk alone and there were times when all five lines would light up at once. This was on top of handling the needs of patient’s in the office and my physician’s business needs, sometimes all at the same time. This physician was an A type personality. One had to be in top form and able to multi-task quickly and efficiently to manage the job. I was like Wylie Coyote in the Road Runner cartoon, zoom here, zoom there and quickly change directions at the drop of a hat. I was good at it though, a perfect fit for this physician and I planned on staying with him until the day he retired.

We fit so well together that he asked me if I would be willing to be cross trained as both his secretary and nurse. In this vein he paid the $500.00 fee for the nursing refresher course I would need to reactivate my nursing license. I was so excited to return to nursing. I studied and did my homework for the refresher course every spare minute I had.

I had been at my job for six months when the migraine headaches I had fought for five years began increasing in frequency. Although I had had a brain MRI back then, I was never told the results, so I assumed it was normal. This time though my symptoms included weakness and dizziness, so my doctor wanted me to have one again. The MRI was scheduled on my birthday in October 2004. I nearly cancelled it, feeling it was a huge waste of time and money. The last one was normal; they weren’t going to find anything this time either, so why bother. One of my daughters begged me to have it done anyway though, and since I was also scheduled to have my yearly mammogram the same day I agreed, telling myself practicing preventive health care is a perfect way to spend ones birthday.

Just three hours after returning home from the tests my doctor called me with the news that a mass had been found on my MRI. She would like me to see a neurosurgeon right away. Even after receiving this news, I still believed it was nothing. Brain tumors were not among the list of health issues in our family medical history. We had degenerative disc disease, strokes, heart disease, diabetes, lung and breast cancer. Those were the things I had on my list to worry about and do what I could to prevent, not brain tumors.

I saw a neurosurgeon the very next day. I went to that appointment alone, still believing it was nothing and I would not need anybody with me to help me cope with what I might be told. I was wrong. He compassionately told me I had a brain tumor. I went into shock. He went onto tell me that it needed to come out, he could do the operation himself at Sacred Heart Medical Center in Spokane, WA, but that he felt it was in my best interest to go to the University of Washington Medical Center in Seattle where they have neurosurgeons who do nothing but operate on brain tumors.

He briefly spoke with me about possible complications of the surgery I needed. One of which was that the surgeon might have to cut near the area of my brain that controls speech, so there was a possibility I could lose my voice.  I am sure he told me much more, but that was all I was able to comprehend due to the state of shock I was in.

The next week found me in Seattle consulting with the best brain neurosurgeon they have on staff. I was instructed to come to the appointment with copies of the films from both of my MRI’s. The night before my appointment I pulled the films out of their protective sleeve intent on seeing this alien that had taken up residence in my brain. Sheets of paper came out of the sleeve along with the x-rays. The papers turned out to be the radiologist’s readings of my scans. Upon reading those reports, I learned that I had had that brain tumor for five years. Apparently there was a mass found on the first scan five years before, but that radiologist thought it was a cyst. I was so angry.

My neurologist in Seattle told me that had he been aware of my tumor at that time, he would not have done anything yet. He would have put me on watch and wait to see what it did, as it was too small then to take the risk of operating. I was still outraged that I was not told of this after my first brain scan, when I would have had years to come to terms with this diagnosis and prepare mentally and financially for the eventuality of having it removed.

Both doctors told me that none of my symptoms, not the headaches, weakness or dizziness were related to my tumor. That the tumor was an incidental finding that was not large enough yet, at 2.5 cm, to be causing such problems. But that it was indeed growing and would have to be removed if not then, than at some point in the future when it grew large enough to become life threatening.

Among the possible complications related to removing this alien from my brain, losing my voice was actually not one of them. He would not be cutting near my voice center, he said. He would be cutting near the part of my brain that processes sight. He told me that there was a 50% possibility that my vision might be affected, that a nerve near the part of my brain that processes what I see might be nicked during surgery. If this were the case, I was told, I would simply view the world differently than other people. He said that many people come into his office with this part of their brain affected by a tumor and they are not aware that they see the world any differently than anyone else

He told me I had two treatment options. I could be put on watch and wait, where I would need to have a brain scan every year to see what the alien was doing in there, how big or how fast it was growing and put off surgery as long as possible. The second option was to have it removed before it became life threatening. He did not want me to make a decision right then, he wanted me to take some time to think about it, talk it over with my husband and family before making a decision. He also told me my condition was not hereditary, I did not need to fear passing it down to my kids; it was my tumor and my body alone that was aberrant.

Upon returning home, I began researching my condition, the choices I had been given and this particular physician to make sure he was indeed the best. This was my brain we were talking about after all. My brain! I could die, I could become retarded, paralyzed, blind, all kinds of things. But my biggest fear was that I would wake up retarded, that the knife would slip and I wake as a vegetable or worse.

Before making a decision I had to take into account the fact that my husband was not working. He had been unable to work due to a work related injury for five years. Like me, so many years before, he was forced into a career change. He had graduated college only a month prior, but the very day he graduated his workman’s compensation funds were discontinued.  He had been looking for a job without success, so our only income was what I earned at my job. I also had to factor in the time I would need to take off work to recover and the fact that we would not have any income coming in. Due to the unique nature of each individual’s brain and the way a particular brain might react to the knife, my surgeon was unable to give me a specific time limit for recovery. It could be six weeks or three months or longer.

Other factors that affected my decision included the fact that my family was terrified of me living with a tumor in my brain. I quickly realized myself that I could not stomach sharing my brain with an alien. In this small way I was grateful I had not known about the alien before then, for I was unable to tolerate having it there. Along with that, my gut told me to have it removed NOW. Every time I have not listened to my intuition in the past, I have been incredibly sorry.

My decision made, I held my breath and leaped into the ocean of the unknown. I knew beyond a shadow of a doubt that God’s capable arms surrounded that ocean. Since He was telling me to take the leap, He would not allow me to sink.

I came to in the recovery room late in the evening of November 1, 2005.  I have always been a quiet person, very private and reserved. I am a listener, not a talker, but I woke up talking non-stop. I knew my nurse was busy and did not have time to sit and listen to me jabber on and on but I could not stop talking. At one point I even put the bed sheet over my head trying to shut myself up. I have no clue what I talked to her about, I doubt she understood even half of what I was saying, as my words were slurry and I was not coherent. But she patiently sat by my bed and let me talk on and on, pretending, I’m sure, that she understood everything I was telling her.

I thought at the time that my non-stop talking was simply a side effect of the fear of losing my voice. Though my surgeon had said that would not happen, the seed had been planted in my brain, so I was still afraid of such a thing happening. It was not just gratefulness to still have a voice to use, however, for this is one of the changes that surgery brought to my life. No longer am I a quiet person, I can talk non-stop now and all too often I do.

Vertigo was another side effect of surgery. It was so severe I was housebound for the first three months, unable to care for myself or be left alone. Falling or being hit on the head could result in instant death until my skull had healed and strengthened enough to withstand such an assault.

I also suffered the visual changes I was warned about, but it was not simply “seeing the world differently in a way I would not recognize” as I was told. When I woke from surgery my world was dim and blurred. It was as if I was looking through a thick wall of plastic. Ask me what anyone in that hospital looked like and I could not tell you. Vision is the most important source of sensory information and mine was damaged. Although all my symptoms improved over the first year, I still have all the same problems today that I did then, just to a lesser degree.

Good visual skills include: depth perception- judging relative distances of objects;how near or far they are; peripheral vision- monitoring and interpreting what is happening in the surrounding field of vision; maintaining attention- keeping focused on a particular activity while interferences, such as noise, is present; near vision acuity- clearly seeing, inspecting and understanding objects views within arms length; distance acuity- clearly seeing, inspecting, identifying and understanding objects viewed at a distance; vision perception- understanding what is seen. My visual problems then and now include all of the above plus blurred vision, reading, comprehension, attention and concentration difficulty, memory difficulty and loss of visual field. I am partially functionally disabled due to acquired brain injury and it changed my life forever.

Three months after surgery, I had to return to work; we needed an income. I was unable to see well enough to drive yet, so my husband had to drive sixty miles round trip twice a day in order to get me to work and back home. Surgery changed me, my personality, who I am. I am no longer able to multi-task or change direction at the drop of a hat. I am not as efficient or as compassionate as I was before. I am abrasive now. People at work noticed the change. Some seemed to be afraid of me and treated me differently. Instead of being a part of the team as I was before, co-workers kept me at arms length. They were unable to accept who and what I became following brain surgery.

My boss lost faith in me and no longer trusted me. I began to be squeezed out of my job. I was not allowed to go to lunch without getting in trouble from the CEO for leaving my phones, even though I had voice mail. If I asked for a day off I was suddenly responsible to find someone to cover my shift for the day. One day my boss pulled me into his office and told me he really cared about me and wanted what was best for me, so to this end he thought I should apply for disability and not work at all. He told me he would do all in his power to assist me towards this end. It became clear to me that I was no longer welcome or wanted there.

The first year after brain surgery is when most of the healing takes place. The second year one will continue to have improvements, but they are so slight you are not aware of them. Fifteen months after my surgery, I began to fully comprehend what my life would be like forever now. On Sunday February 5, 2006, I wrote in my journal:

“It hit me hard the other night, reality smacked me in the face that this is the life I have now. Who and what I am now is permanent and is not going to change. It is as if the me who was born forty years ago or so is gone, dead. A completely new, different person, life was born. A me I do not know or want. My life, me as I knew me, completely gone, wiped out forever. This is no longer a waiting game, give it time and it will pass like healing from surgery. This is what I am left with. I cannot overcome anymore, I can only adapt. This is a horrifying, mind blowing, and grief laden realization”.

Three weeks later anger began surfacing. On Sunday February 26, 2006, I wrote:

“I have anger I need to deal with, release. Negative energy that does not do me or anyone any good, it will only cause harm. The anger is an emotion, but I do not feel this emotion, I only recognize that the anger is there. It is so hard to deal with what you do not feel. I am not angry at a person, object, or something you can confront, rage at or pound on. I am angry at an ethereal, harmless something; the universe? I am angry at life, the way life has treated me. I am angry that my life has been ripped away from me and I have to become this whole new person. I am angry at all my losses. I liked me, I liked my life, I liked who I was, what I enjoyed. I am not a bad person, a horrid person. Why did Leza have to completely die and a whole different person be born who I do not want to be or live her life?”

 “I want to exercise myself into the ground day after day until I am exhausted, all that negative energy released, depleted, used up, so it can no longer harm me”.

“I ask myself what am I afraid of? Why am I afraid to feel my anger, hold it, examine it, feel it? For this anger is a clinical observation right now. The truth is if I feel the anger and deal with it, then I must accept the reality of who I am now and who I no longer am. Accept the loss of me, my intelligence, and my eyesight. I must embrace this new life and let go of the old me that was, the life I had and loved. And if I accept my loss, who I no longer am, accept this new life, this new person, it means letting go of the old me and saying goodbye forever. It will mean letting go of denial - that this new me is only temporary; if I wait long enough it will all be over and I will return to who I was before my brain was cut open.”

It has now been 2 ½ years since my brain surgery and the changes to my life are profound. I am easily irritated; I do not have the ability to quickly change the direction of my mind anymore. Words fly out of my mouth before I can stop them or even know I am going to say them. Some of my inhibitions are gone. If someone irritates me, angers me, annoys me, I do not have the ability to hide it anymore. What I feel at a given time comes spewing out of my mouth. I do not have the patience, understanding, compassion, ability to fake it with people that I used to have. If an ace is an ace I call it an ace and not a spade and nothing I do can stop me from saying so.

 My brain processes information slower than it used to. I don’t catch meanings of words or phrases easily anymore. Give me a set of instructions and I may cry-overwhelmed because I cannot understand what I am supposed to do. Say too much at once, too fast and my brain literally shuts off and no longer computes or hears what you are saying. Many people talking at once or a radio on or some other noise and I cannot focus or function any longer.

When ones visual system is inefficient, any task requiring the visual sense is difficult, using more energy than a person with normal vision would require. Fatigue is a major issue following any brain injury, so to preserve my energy our home is now very simply decorated, only pure white walls, with no clutter of any kind. I need wide spaces with nothing out of place; otherwise I will have to work to comprehend what I am looking at. Or I won’t see an object if it is out of place on the floor and I will run into it and trip.

Sometimes I may be looking right at an object I am looking for, but not recognize what it is I am looking at. Put a set of keys on a silver table and all I will “see” is the table. My brain may not process that there are keys on that table. My clothes and jewelry are color coordinated so I do not open my closet and see nothing but a jumble of color which makes my brain go crazy and again I cannot decipher what exactly I am looking at.

I have difficulty reading. If the font is too small I cannot make out words at all, so I keep a magnifying glass in my purse. If I am tired, I cannot read at all no matter how large the font, for the words are not clear to me, they are fuzzy. It is as if what I am looking at has shifted either to the right or left, putting my visual perception off kilter. Besides which I won’t be able to concentrate or remember what I have read. Some days are better than others, but my world is never clear with well defined edges now.

Where once I enjoyed shopping, it is now a horrendous ordeal for me. I cannot step foot in a store, any store without vertigo hitting. This happens even though my brain has compensated for my visual loss by increasing my senses of smell and hearing. The degree the vertigo hits varies depending on how tired I am, how many people are in the building, how the store is laid out. Anything, anyplace new totally throws me. If there are too many details, too much visual sense around me for my brain to decipher what I am looking at, my brain goes into a sort of shock. If I don’t remove myself from the situation, I get nauseated and start to black out.

I cannot travel far anymore. Too many things going past me too fast gives me severe vertigo and nausea. I have found that wearing dark glasses with my peripheral vision blocked helps. Also traveling at night makes it easier to bear. Neither do I travel far from my home base unless someone else is driving. I stick to the town and streets I am familiar with. It is not safe for me to drive in cities or on roads unfamiliar to me because of my visual dysfunctions and inability to quickly process new information, new sights. I am now one of those people who do not make a left hand turn unless the nearest car is about a mile away. I am afraid I will pull out into an intersection and my brain will not have processed that there is a car coming, or a person crossing the road, or I will misjudge how far away another vehicle really is.

My short term memory is very poor. I put objects in their logical place, the same place every time or I will most likely not remember where something is.

My words slur when I am tired or stressed. My brain shuts off and refuses to function. I cannot find the words I want or they come out as alien speak. I know what I want to say, but it comes out as alien language, not the word I formulated in my brain. I am now dyslexic; I type and see some letters backwards. I could type up to 100 words a minute with one mistake before surgery. Now, it is normal for me to type letters backwards. For instance if I want to type the word Brian, I will type brain instead. I type fog and it comes out gof. My letters get twisted and this happens when I read also, or I fail to see a letter, which changes the meaning of a word completely, so I have to go back and reread a sentence, which slows my reading comprehension.

I have forever and all time let go of my nursing now. Due to my visual dysfunctions I would not be a safe nurse. I ended up leaving the job I had held for nearly three years and planned on keeping until I retired. I left to work in a quieter, less stressful office. I did not mention my disabilities or my medical history to them. I wanted a fresh start, to be treated the same as anyone else. I did not want to be judged as incapable or treated differently because of having had brain surgery. I had never lost a job in all my adult life, but I lost that job after three months. I secured another job and lost that one after two months. I am afraid to go out and try another job. I am a fighter though, not a quitter. I have had multiple people tell me to give up trying to work and apply for social security disability. Instead I have started my own secretarial/word processing business at home. I will keep on fighting to survive and I will do all in my power to fight to have brain tumors become a distant memory, a disease that is wiped out completely and forever.

 Although my surgery was completely successful from a surgeon’s standpoint, in that he was able to remove every bit of the tumor from my brain, it is impossible to remove every aberrant cell. Though that alien is gone, he may have left some cells behind to resurrect his life again at a later time. Every year for the rest of my life I will have to have a brain MRI. Every year for the rest of my life there is a 1% chance that my tumor will return. This chapter of my life will never be closed, unless researchers are able to come up with a solution to wipe out brain tumors from our vocabulary forever. The brain is the seat of the intellect, without it no part of our body can function. Though most meningiomas are termed “benign”, nothing that invades your brain is in fact benign. Your life is changed forever with the diagnosis of brain tumor.