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Survivor Stories — Sharon Morin

Sharon Morin
Sharon Morin

Brain Tumor Surgery:
What I Wish I Had Known

by Sharon Morin

I was diagnosed with a benign brain tumor located in my right temporal lobe last June. Once the shock of “brain tumor” dissipated, I finally had some answers. When I had my annual physical last April, I told my primary care physician I had been experiencing memory lapses. He wasn’t particularly concerned; we both attributed it to getting older. But these lapses got worse over the next several weeks. I would often forget what had happened earlier in the day or, at times, only minutes earlier. One day, for example, my daughter told me she was going out and told me with whom and where. My husband was in the room. After she left, I asked him repeatedly where she had gone, each time forgetting that first she and then he had already told me.

I was also easily confused and disoriented. At work one day I forgot how to get back to my office from the bathroom down the hall, despite the fact that I had worked in the same building for over twenty years. I began having trouble concentrating. I am an English professor at a small college and have a substantial amount of reading to do for my classes. By late last spring, very little new material was sinking in. Getting to the bottom of a page and not remembering anything I just read was becoming the norm. There were physical symptoms as well. Although I’m not normally particularly clumsy, I tripped and fell twice last spring, once chipping a tooth. A more ongoing problem was fatigue. No matter how much sleep I got, I was always tired. Even short walks seemed to take a tremendous effort, and any attempt at working out at my health club ended after fifteen or twenty minutes. It took me three days to dust my bedroom; I was only able to dust one or two pieces of furniture a day before feeling exhausted. Finally, on Father’s Day last June, I had two episodes that I later learned had been seizures. They weren’t dramatic (I didn’t fall on the floor or foam at the mouth), but significant enough to alarm my husband and daughters. One seizure involved me sitting at the kitchen table and dropping my chin to my chest. I didn’t respond to my family when they tried to speak to me. When I came out of it a couple of minutes later and they told me what had happened, I assured them, “I’m fine.” Clearly, I wasn’t. The other seizure was a short while later; I simply couldn’t stop my eyes from blinking rapidly and continuously. I saw my primary care physician a couple of days later; he sent me for an MRI, and the diagnosis was made.

My surgery took place on July 17 at one of the top hospitals with one of the leading brain tumor centers in the country. The eight-hour surgery went smoothly, and my neurosurgeon assured my waiting family that I would be fine. I was able to talk a bit to my family a couple of hours after the surgery, which they thought was astounding. The next few days were spent gaining a bit of strength, undergoing simple neurological tests (I was asked about three times a day what year it was and who the president is), and resting quite comfortably in my hospital bed. Before the surgery, my surgeon had told me that there is virtually no pain associated with brain surgery - amazing, but I found it to be true.

 I was discharged four days after the surgery. I trusted that the hospital personnel would tell my family and me all we needed to know as I moved into the
recovery stage. The discharge nurse was thorough with the basics: She went over my prescriptions with my husband and me, giving us a written list of medications and a detailed schedule for taking them. She also described danger signs to watch for (primarily a fever which could indicate infection). I was told that it would be “a long road” and that I should have patience. I later wished I had a better idea of what that vague prediction and advice really meant. It didn’t occur to either my family or me to ask for a more specific explanation of what an “average” recovery for a neurosurgical patient was like: the duration, what my symptoms might be, and what physical limitations I should expect.

For the first ten days at home, I was on a heavy dosage of steroids. I was bloated, ill, but at the same time I felt strong physically. I was able to do a fair amount of walking, both around the house and even outside. I quickly abandoned my walker, which had been provided by the hospital. I began to think, “This recovery period will be easy-I’ll be better in no time!” Then came the weaning period. As ill as I had felt while on the steroids, coming off them was far worse. Nausea was my chief symptom. I hadn’t been eating very much since I had come home, but I was eating far less at this point. Fortunately, the nausea lasted only a few days. But worse than the physical symptoms of the weaning process was the gradual discovery that the “strength” had come from the steroids, not me. Once off the steroids, I was extremely weak physically. On a very good day I could walk outside, down the street about four houses, and home again. For several weeks, most days weren’t that good.

There was follow-up medical care from a physical therapist and home healthcare nurses for my first two weeks at home. The physical therapist wanted to make sure that my environment was safe: She checked out the bathtub, watched as I climbed up and down the flight of stairs between my first and second floor, and she had me practice walking a straight line across my kitchen floor. After once-a-week visits for two weeks, she said I no longer required her services. The visits from the home health care nurses were slightly more extensive; they came three times a week for two weeks. Much of the nursing care was standard: temperature (which did become an issue for a few days, but never reached the critical 101 threshold for an emergency visit to the hospital), blood pressure and an inquiry about my symptoms.

The nurses were aware that in those early days I was getting very little sleep. I awoke every night with my mind darting from one topic to another. Like an undisciplined puppy, it would race wherever it wanted. Thoughts were random, scattered, and impossible to slow down or shut down. It felt as though my mind were “rebooting” itself. I often found myself scribbling notes frantically or waking my husband up at around 3am with thoughts that seemed urgent at the time. For instance, one night I was determined to talk to him about the best way to rearrange the family room furniture to make room for the Christmas tree; this wouldn’t become an issue for five months, but I felt my husband had to hear my ideas at that moment. During these times, I would talk incessantly and very rapidly for one or two hours, sometimes longer, rarely going back to sleep. The worst of this lasted about three weeks. After that, I would still wake up, but my thoughts gradually became more focused and slowed to a more normal pace.

What didn’t disappear as quickly were the feelings of dizziness, wooziness, spaceyness. Early on in my recovery, my home health care nurse best characterized it as feeling drunk. I felt this way almost all of the time. It was impossible to read, watch TV, or even carry on a conversation. These symptoms were often accompanied by an extreme sensitivity to light and noise. I never left the house without sunglasses. Most of the time, my husband and I had to eat dinner without a light on in the room, and I had to ask him to speak in a whisper if he absolutely had to speak at all. A few weeks into my recovery, my sister drove me to a small neighborhood grocery store that I thought would be manageable. However, by the time we had chosen a few items and were standing in the checkout line, she sensed how overwhelmed I felt. To help me get through what had become a formidable chore, she gently rubbed my back until I could return to the car.

Over time (several weeks), I began to notice that I would have periods, usually in the morning, when the symptoms would recede. I remember the first time this happened; I was standing alone in my kitchen, and, in amazement said, “I feel normal.” I soon learned to take advantage of this time, always feeling like the clock was ticking and knowing that soon the “drunkenness” would return. But during those good periods, I was productive. My daughters both remarked that the house was cleaner than it ever had been. I paid bills, made to-do lists, spoke with friends on the phone-all simple tasks that were next to impossible to perform when I was experiencing symptoms.

By this point, I no longer had any at-home health care. I was able to reach a nurse by phone when I had basic medical questions to ask. For any questions that veered into the neurological realm, I was told to ask my neurosurgeon. Unfortunately, I found it next to impossible to reach him. I had a particularly “bad” week in August, about a month into my recovery; the dizziness and wooziness were much worse than they had been. Also, at the beginning of that week, I looked at myself in the mirror one morning and was startled to see a silver dollar size indentation on the right side of my head, extending upward from about two inches in back of my right eye. It literally appeared overnight. My fear was that somehow this indentation and my severe symptoms were connected. I tried repeatedly to reach my neurosurgeon. It took me an entire week, a week filled with frustration, anxiety, and at some points fear (“Should I be feeling this bad? Is this really normal? Has this indentation done something to my brain?”). When I did finally speak to him, he told me to come into the hospital the next day for an MRI. The MRI showed significant improvement compared to the one done two days after surgery; there was no medical explanation for why I was feeling the way I was feeling. As far as the indentation on the side of my head, my neurosurgeon told me that it is harmless and unrelated to the severe symptoms. It is the result of the “burr hole,” the hole made in the skull by a surgical drill. He informed me that sometimes, weeks later when some of the swelling has decreased, the site can collapse inward a bit, leaving a permanent indentation. I was relieved to know that nothing major was wrong; it just shouldn’t have taken a week to find that out. If only there had been someone else I might have called so I could have had some reassurance earlier.

Aside from that one appointment, we were on our own. My six-week follow-up was scheduled for a week after my “emergency” visit. I went armed with questions to ask, but there had been some mix-up; my neurosurgeon’s secretary had cancelled the second appointment, thinking the first appointment replaced it. I left my list of questions with her; she assured me he would call me with answers. He never did. It finally began to dawn on me that he is a surgeon, not a contact person to answer all of the questions that come up during the weeks following surgery. There was no one to get answers from. Other practices may be different, but this was my experience.

By September I began to have “good days,” but in a way this was one of the most frustrating periods of my recovery. The good days were just that-a single day and not a sign of “turning a corner”; one good day was often followed by two, three, four, or more “bad days.” Unlike other kinds of surgical recoveries that may have some setbacks, but progress for the most part is slow and steady, recovery from brain surgery is slow indeed-but definitely not steady.

One of the most disturbing consequences, perhaps of my surgery or perhaps of the brain tumor itself, is the loss of memories. I have lost vacations with my husband and children, holiday celebrations, visits with extended family, even the doctor’s visit when I was first diagnosed. I look at pictures of me with my family and can only reconstruct what I’ve lost based on their retelling of events. I didn’t even recognize a winter coat hanging in my coat closet that I bought a year ago. My doctor has said some memories may return; it is ten months out and very few have. I try to remind myself that lost memories are really a small price to pay for the fact that I am now physically healthy and mentally alert. The fact that surgeons can tinker around in my brain for eight hours, and the only negative result is some missing memories is truly astounding, and yet it is also devastating.

Not all the symptoms resulting from the surgery are bad. Some, which I’ve experienced and in some cases continue to experience, are just plain odd. For example, early on in my recovery, there were peculiar smells: Gouda cheese and toast – both of these happening outdoors and on several occasions, nowhere near a place that would have Gouda cheese or toast. Some food and beverages that I used to love, I can no longer tolerate; for instance, I had had three or four cans of Diet Sprite every day for the last six years. Since my surgery, I can’t bear the taste of it. I can’t stand the thought of drinking anything alcoholic either, even though I used to drink wine and have a Cosmopolitan or two almost every Saturday night. Candy and cookies, a real weakness for me pre surgery, no longer have much appeal. Fortunately, some of these are things I am better off without. As a result of these changes, I have lost about forty pounds (forty pounds I needed to lose).

Another oddity that lasted for many weeks involved my inability to walk to my left. When I was finally strong enough to do some real walking, I was limited to
moving to the right. I’d leave my house and go to the right, a route my poor dog had never before taken in her fifteen years. If I had something to mail, since the mailbox is four houses to the left, I had to carry my mail all the way around the block to get to the mailbox. Trying to turn left would cause anxiety, almost panic, and vertigo-like symptoms. Thankfully, that particular problem has disappeared. And on the subject of left and right: I am left-handed, but a few weeks after surgery I began to notice that I am doing things with my right hand I never could do before: I dust, throw a dog biscuit to my dog, put on make-up with my right hand. So far, I still write with my left.

I am now ten months removed from the surgery. The wooziness and dizziness have subsided and return only when I am overtired, hungry, or under stress. This happened about five months ago. At first I was skeptical, expecting the symptoms to return at unpredictable times, as they had so often in the past. But they haven’t. Now I can anticipate (and sometimes even avoid) their return. My mind is alert and I can remember almost everything that has happened since my surgery. I can go to a movie, go shopping, go out to eat-all things that seemed impossible just a few months ago. In fact, I have returned to teaching and am glad to be back.
I sometimes think about what I wish had been different as I worked through my recovery. There were so many questions I didn’t know to ask before my surgery, yet there were so many questions I needed answers to post surgery. If only there had been a hotline or resource to call as I experienced different signs and symptoms. I couldn’t turn to the internet because it was months before I was able to log on – and I first had to retrain myself on the computer.
However, there are things that are under the patient’s control. As a neurosurgical patient, each person’s experience will be different, but I can safely suggest that you should prepare yourself in the following ways:

A few weeks ago I flew to Chicago to visit my younger daughter who moved there a month after my surgery. This was the first traveling I have done, in itself a milestone for me. My greatest ambition since surgery was to see her apartment and her new life. I have been able to do that; I am grateful. Life has returned to a new state of normal.

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