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CHAPTER 1
A Diagnosis from Left Field
Let's back up a bit. I grew up in a little Michigan town with dreams of not much more than getting by in life. While bouncing around, trying to decide what to do with my life, I discovered computer programming at the community college. It was love at first sight and I dove in, never looking back. With a degree in computer science from Western Michigan University in Kalamazoo, I accepted a job at The Upjohn Company, the place to work at the time. I loved technology and built my own computer, from motherboard to modem card, shortly after PCs came into the world. I was a geek.
I spent many years in corporate information technology (IT) as a programmer and advanced into management. When car phones came out, I immediately had one bolted to the console of my little Subaru. It was heavily used. As mobile phones advanced, I always acquired the latest technology as soon as possible. I talked on the phone almost daily as it allowed me extra work time while getting to or from work. I traveled a lot during my career and again depended on mobile technology in an attempt to "do it all."
Technology allowed me to squeeze more time out of each day. It was always my goal to be home for dinner and evening activities as my two daughters grew up. It was in the Kalamazoo area that I married, raised kids, divorced, and focused on my career. In late 2003, my job was phased out in a corporate merger. I went home and didn't know what to do. I couldn't do nothing — I didn't know how.
After a few restless months off, I moved to Princeton, New Jersey, for a job that eventually led to me joining a consulting firm, The W Group, based in Philadelphia. It was a wonderful opportunity, and I loved what I did. I traveled extensively to assist corporations in optimizing IT spending decisions. I spent most Mondays in airports heading somewhere and Thursday evenings returning home. If local, I spent hours in the car driving to clients in the Philadelphia area.
For a few years, I had been experiencing ringing in my ears. While driving from Princeton to Philadelphia daily, I began to notice I could hear my cell phone better if held to my left ear. Following an eighteen-month assignment for a Philadelphia area client, I commuted to southern California weekly for seven months for my next assignment. I invested in Bose noise-cancelling headphones to protect my ears from frequent air travel noise. I noticed when I got home at the end of each week after taking the redeye flight, listening to Jim Brickman and Jimmy Buffett on my Blackberry, my ears would be ringing louder for the weekend.
I meant to ask my doctor about it at my annual physical, but would forget. I assumed I would be told it was just due to my age and frequent travel. I tried a few over-the-counter remedies to no avail. Each year, I would make a mental note to ask again the following year.
In November 2007, I moved back to Michigan, to be closer to family. I started commuting weekly to Philadelphia for a long-term project assisting with vendor management. It was a busy but good routine, and I loved the work I was doing. I leased an apartment in the Philadelphia area to eliminate the need to carry luggage weekly. It was a great little apartment, and I settled in quickly. I loved my life. I was doing what I had dreamed of — consulting, traveling, adding value.
In early 2008, my right eye started watering. Sometimes both eyes watered. I started to have a strange sensation on my face. Even when my right eye wasn't watering, it felt like it was. I started to feel like the right corner of my mouth was drooling. It wasn't, but the sensation was always there. I blamed herbal facial products I was using, so I started switching products. It would improve for a while and then return. It had to be something I was doing in my routine!
I failed to gain any improvement in my hearing despite over-the-counter products, headphones, and even ear candling. I definitely had less hearing in the right ear. It wasn't just ringing, and it wasn't just road noise. I did research on the Internet and didn't find much, but I learned that sometimes the three little bones in the ear are messed up. I also heard sometimes calcium builds up in the ear. So I decided to get a hearing test to determine if there really was a difference and to have a baseline for later in life when I might need a hearing aid.
I went to a hearing center at the end of July to have my hearing tested. The audiologist asked me if I had any numbness on my face. I immediately said no because I hadn't connected my facial sensations to numbness. I sat in a grey soundproof booth, with wires coming from each ear. I saw the audiologist and clearly heard his prompts in each ear. I noticed I heard more sounds in my left ear than my right one. Afterward, as I looked at the audiology report showing a definite difference between the lines representing my two ears, the audiologist explained that travel and age should affect both ears equally. I had a marked difference in the right ear. He recommended I see an earnose-throat specialist (ENT) because it could be something treatable, or even something as serious as a brain tumor.
While I was confident I didn't have a brain tumor, I did take his advice to have it further checked out. In the car going home, it struck me that the weird sensations on my face could be described as numbness — a numbness I had dismissed as insignificant. A strange feeling in my gut started to develop.
Clues from the Past
I didn't allow myself to think it could be a brain tumor. In the past, I had let my imagination get the better of me when waiting for test results and didn't want to do that again. Slowly, over time, I started to remember things, seemingly insignificant at the time, from the past. In 2001, I had strange little bursts of pinging sounds in my brain and wondered. Around the same time, I went to the doctor with severe vertigo and was told I was suffering effects of flying. For several days, I had to touch a wall to steady myself, and slept with a foot on the floor to stop the room from spinning. I fought it, it went away, and I regained my balance. I realized my eyes had looked different in pictures for the past few years. The right eye had, over time, started to be opened wider. I started to connect the dots.
Following my hearing test, I made an appointment with an ENT, but it wasn't until September that I could get in due to my work schedule. Having to make all appointments on Fridays when I was home was difficult. I pushed everything to the back of my mind. The urgency was starting to build for me to find out what was going on. The gut feeling that something was seriously wrong was growing.
Finally, September came. I was working from home for the Labor Day week, so I had an appointment with the ENT on Tuesday. The doctor was an energetic lady who I instantly liked. She asked me if I was ever dizzy, and I said no. Not since 2001. She handed me a brochure and said it might be Meniere's disease. There is no cure, but things like cutting salt can minimize the symptoms. Gee, how encouraging. She turned to my patient records, and I saw her write three simple letters: "MRI." She wanted to eliminate anything "scary" before we proceeded with a diagnosis. My appointment lasted about ten minutes.
She sent me off with a brochure on Meniere's disease, the MRI phone number, and a mid-October appointment to review the findings. I had plans to go to Mackinac Island with my family that weekend. On Monday, I had a flight back to Philadelphia for work. So I sandwiched an MRI into Sunday evening at 7:00 PM. I was too busy to have anything seriously wrong with me.
Nine of us headed north to Mackinac Island. It is between the lower and upper sections of Michigan. We wandered around the picturesque little town on the island that allows only horses and bikes — no motorized vehicles. I remember sitting on the porch of an old building in Fort Mackinac watching rain fall steadily during one of many showers that day. My brother joined me as the others went into the gift shop or were trapped in other buildings by the sudden downpour. "I have an MRI tomorrow night. There's a chance I have a brain tumor."
He asked a few questions, but then said, "Don't worry, it will probably be nothing."
We sat quietly, watching the rain, each processing our own thoughts.
Sunday morning came, and nine of us headed south. Back to life, and back to reality.
The Test and Long-Awaited Results
The MRI had a little mirror in it, which kept me from being too claustrophobic in the large, white, tubular machine. I didn't know what to expect. I heard a series of loud banging noises. The operator told me how long each series would be through a speaker in the tube. There were several people in the control room chatting while one guy kept an eye on his computer monitor. Then the room was empty except for the one intently watching his screen. Did that mean anything? No, it probably meant a shift change. Half way through, a man came in to inject contrast dye into my arm. He asked me if I was doing okay. I assume they ask everyone that, but I felt like he was handling me with kid gloves. After about forty-five minutes it was over. I was dismissed and heading home to pack for two weeks of work. I pushed the concerns away, and dove into life. I would find out in October what they had found. Nothing, I assumed. I told myself if the doctor was really concerned, she would have given me an appointment sooner.
Kendra came with me to Philadelphia the next day. She had graduated from University of Michigan that spring and was hanging out with me until she left for eight months in France. She speaks fluent French and was going to teach English as a second language in an elementary school. I was excited to have her come with me to Philadelphia for a week. Through the years I had frequently taken my daughters with me on work travels, so she knew the routine and would fit right in with a mixture of alone time and Mom time. She could meet my colleagues and see my Philadelphia apartment. We had a company meeting in downtown Philadelphia scheduled Thursday and Friday, which would give her an opportunity to explore the city. She would stay the weekend, and head home Sunday. I would stay through the second week for work, and head home Thursday evening.
Two days after the MRI, on Tuesday, September 9, 2008, at about 11:15 AM, I got a call from the doctor's office. I will always remember the specific date, time, and how it felt to get a lifechanging call. I was sitting at my desk. The doctor's appointment secretary told me they had found "something abnormal" on my MRI, and I needed to come right in to see the doctor. I told her I was out of town for two weeks, so I wasn't sure how quickly I could get in. She said it was urgent and the doctor would make time any day for me. Wow. A "kick in the gut" moment. I remember the piece of paper I was scribbling on. Taking notes, "Any day, anytime", "something abnormal." Brain tumor came to mind, but it was unthinkable. I told myself it was something less severe. She probably found something wrong with the bones in my ear.
I told her I had plans that week, but would come home Sunday and meet with the doctor on Monday. I was protecting the time I had with my daughter and afraid that once I saw the doctor my busy bubble would burst. I thought of jumping on a plane right away, but it seemed to be overreacting. Making a big deal with the client about leaving work early would end up embarrassing. It was better to keep quiet.
After hanging up the phone, I sat for a minute trying to catch my breath. I didn't want to cry in my office. Any day, any time. Something abnormal. I took deep breaths. I left my desk, and just started walking down the hall between rows of cubicles. I remember turning left. Not going anywhere, but needing to not be where I was. Maybe the bathroom. Maybe outdoors. Amy, a client colleague, paused to ask me a question, and then stopped and stared at me. "Are you okay?" "Well, no. I just heard from my doctor and I don't know what's up. They said it's urgent that I return for something 'abnormal' on my MRI. Please don't say anything." I didn't intend to talk about it to anyone, but she came along at just the right time.
"Absolutely. I survived breast cancer and can still remember getting the diagnosis." She told me about hearing her diagnosis and then about the positive outcome after treatment. She was a great comfort. She offered that if I needed anything to let her know.
"Thank you, Amy. I'll let you know. Hopefully I'll be right back here next week and it will have been nothing."
Just telling someone helped. I could breathe again. I know God sent her down the hall at work that day to ensure she would run into me. I can't say how much it calmed me. I knew cancer was an option, but couldn't believe anything serious with such minor symptoms. I felt fine!
I worked the rest of that day and Wednesday. Every meeting found me preoccupied with the upcoming doctor visit. What could it be that they found abnormal? I watched time tick by on clocks. I watched mouths move. Life was normal for everyone but me. Trees outside the conference rooms were green. Would I see them the following week?
I did an Internet search on brain tumors but the topic was too broad and overwhelmed me. I sent a note to my parents telling them I was coming home on Sunday with Kendra for a doctor's appointment. I told Kayla I had something abnormal on my MRI. I told Kendra too, but we pushed it out of our minds. As much as we could.
Having Kendra with me that week was a great comfort. We didn't talk much about the possible outcomes, but having her there calmed me. I think God planned that also. While I wanted to freak out and cry, having my daughter with me kept me together. I kept reminding myself that I was her mother, and I couldn't allow her to be scared. She needed to see me strong. Later, Kayla and Kendra told me they had talked during the week. They knew it had to be serious, but they weren't prepared for a brain tumor.
Company meetings on Thursday and Friday were a great time to see everyone I work with, as we were normally spread out over the continent at various consulting jobs. We laughed a lot during the evenings at dinner. I told a couple of friends that I might have a brain tumor. Their reaction that I might be overreacting calmed me. All the time, I was incredibly happy and kept taking mental snapshots to remember the fun we had. Laughing over a glass of wine. Chuckling about a wisecrack. My work colleagues loved Kendra, and she was made to feel like part of the family.
Saturday was spent shopping with Kendra. We bought posters for my apartment. We bought a ridiculous tree lamp, about 5 feet tall and a challenge to take home. I thought about the abnormal test. If it was bad, I would be closing up the apartment. So something told me not to decorate, but I couldn't stop. Continuing normally kept me together. I had a headache, and realized I had been experiencing more headaches recently. I was paranoid. One minute I had a brain tumor causing headaches. The following moment was fine with the doctor overreacting about something minor. I would tell myself I was crazy and headaches were from the stress of waiting.
Finally Sunday came and we flew home to Michigan. Due to thunderstorms rolling through the Midwest, our plane was diverted and then delayed. I tossed and turned for most of the night.
Monday morning was slow. I spent time in my home office doing work. Keeping my life normal and on track. I wondered out loud what the doctor could possibly want to talk about. Kendra looked normal externally, but was clearly concerned. Neither of us dared to say out loud what it might be.
I kept looking at the clock. It occurred to me that I should have someone come with me to the doctor's appointment, but didn't want to show alarm. It was important to keep it together. It was important to handle it alone. Little did I know how wrong I was and how blessed I would be soon by the people in my life.
Kendra had an eye doctor's appointment at the same time as my appointment. I thought having my parents come with me was definitely overkill. Asking Kayla to drive an hour to go with me would have been absolutely ridiculous. Finally, the time came, and I said good luck to Kendra. We headed our separate ways to two very different appointments.
I arrived at the hospital reassuring myself it was going to be nothing. It wasn't going to be a brain tumor. What if I had cancer? Would I go through treatment? In my mind, a brain tumor was a death sentence. I was going to be brave and refuse to go through difficult treatments. The next minute I was dismissing that as a diagnosis. I looked calm sitting in the waiting room but inside I was panicking. This is a big deal. No, it will be nothing. This is a big deal. The doctor's mother was an artist, and the walls of the waiting room were lined with large and colorful art. Strangely out of place, wonderfully distracting flowers and landscapes.
(Continues…)
Excerpted from "Smiling Again"
by .
Copyright © 2014 Sally Stap.
Excerpted by permission of Morgan James Publishing.
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