First Warning: Suspicious Headaches After 9/11
It all began last fall, when, at the age of 45, I started experiencing chronic headaches and strange tingling sensations in my head. This was right after September 11th and, as a veterinarian, I was working at my clinic in New York City, caring for the rescue dogs from Ground Zero -- as well as dealing with personal 9/11-related losses -- so I assumed it was just stress.
Then, one Friday morning in October, while walking home after dropping off my kids at school, I started to have several small seizures, which were accompanied by numbness and tingling on one side of my head. Since I live in a very suburban area, which becomes fairly deserted in the morning, I walked the remaining three blocks down the center of the street, thinking that if I were to pass out, someone would see me lying in the middle of the road.
When I finally arrived home, I told our baby sitter of 10 years, "I'm really frightened. There's something really wrong with me." I remember telling her, "If anything happens to me, make sure you stay and take care of my kids for me."
My best friend, who's a surgeon at a New York hospital, quickly arranged for me to see a neurologist colleague of hers. And when I met with him later that day, he immediately scheduled an MRI. Not a good sign, I thought, but there was still a chance that this could be something relatively minor.
The Verdict Is In: "But I'm a Mother!"
I was told that the MRI scan would take no more than 20 minutes. After an hour in the machine, I knew something was wrong. When it was finally over, I saw my husband standing in the hallway with the doctor. I could tell from the look on my husband's face that the prognosis was not good, and the doctor only confirmed my suspicions when I heard him speak the words, "You have a brain tumor."
My first reaction was to respond, "But I'm a mother!" To which the doctor replied, "I know." So I countered with, "But I have two little kids!" And he said, "You have a brain tumor, but you're going to have surgery and you're going to be fine."
[The official diagnosis was a meningioma, a benign (non-cancerous) tumor in the left-frontal region of Kim's brain. As in Kim's case, meningiomas occur most often in women between the ages of 30 and 50, and most are slow-growing but can become large before symptoms appear. The standard treatment is surgery.]
After getting the news, my husband and I walked back to my best friend's office, and she and I cried together, which was the only time I cried during the whole process. I asked her where I went from there, and she gave me three names of brain surgeons, one of whom was Memorial Sloan-Kettering's Dr. Philip Gutin.
Finding a Doctor: "Brain Tumor Review"
The following Monday we went on what I called the "brain tumor review." The other two doctors on the list were fine, if a little cold and clinical, but meeting with Dr. Gutin and his staff was so much warmer and more reassuring.
First, I met with Dr. Gutin's nurse administrator, Patsey Yeo-Ramaker, who is an angel. Needless to say, you're more than a little frightened when you come in with a brain tumor, and Patsey instantly put me at ease. There was an immediate warmth, gentleness, and kindness, all of which I was desperately in need of at that particular moment. Right away, she handed me a card with her work number and her beeper number, saying, "You can always reach me with any worries or concerns." Thanks to these small but important gestures, I felt connected, like I had a help line.
After meeting Patsey, I then met with Dr. Gutin. He sat down with me at a table, which is so much nicer than sitting across a great, big desk. He put his hand on top of my hand and said, "I'm going to fix you." It was the most incredible gesture. I felt like he really cared for me and that he was going to help me. It was a tremendous relief. My husband, who is a doctor, grilled him on all the numbers: How many of these procedures does he do a year? What is the success rate? Dr. Gutin -- unlike some of the other doctors with whom I met -- comfortably provided all the answers without feeling threatened. All in all, I was struck by his warmth, gentleness, and confidence.
Of course, it was still an enormous decision for me. However, the doctors I knew agreed that the team aspect is so important to surgical care, especially brain surgery. You need the opening team, the closing team, and the post-operative care team all to be working in harmony. And my sources all agreed that Dr. Gutin's team had this harmony -- every hand knowing precisely what the other is doing. And this is exactly what I was to find during my own experience at Memorial.
So I had my doctor and now all I had to do was to tell my kids.
Telling the Kids: "Is it Because You're A Vegetarian?"
Three days before the surgery, we had a family meeting. I sat down with my son, Aaron, and daughter, Jami, and I asked them, "Do you know what I do for a living?" They said, "Of course, you're a vet. You help sick animals." When I asked how I help sick animals, my son went into a long detailed description, mentioning surgery as one of the treatment options. So I said, "Yes, I do a lot of surgery on animals, and sometimes parents need to be helped that way, too." Then I very calmly explained that I had a growth in my head which needed to come out. I never used the words "tumor" or "brain." My daughter asked if it was because I was a vegetarian. She was looking for a reason why this happened. I told them when I was scheduled to go in for the surgery and when I was expected to be released -- I wanted to make sure we kept them up to date on everything, so they wouldn't have to worry and guess.
Despite being a physician, my husband had a difficult time showing his fear and accepting the seriousness of my illness throughout the entire process. He had a hard time focusing on the reality. He decided that, for Dr. Gutin, this type of procedure was like removing tonsils. Routine. He told me, "You're going to be in and out." I only wished it would be that simple.
Surgery: The Day of Reckoning Arrives
I had to be at Memorial at 5:45 a.m. on the day of the surgery. Walking into admissions, the woman at the desk took one look at me, smiled, and said, "Good morning, Kim!" Then instead of just saying, "Here are your papers. Go up to the 2nd floor and look for the signs," she personally escorted me all the way up to the ambulatory suite. It was an incredibly nice touch, the kind of thing that makes all the difference at a moment fraught with such fear and uncertainty.
In preparation for the surgery, they sent me for brain scans. The two technicians who did the scanning were so nice, asking me about my family and kids. And, then, three days later, when I came back for post-operative scanning, the same technicians not only remembered me but asked, "How are Jami and Aaron?" You can't imagine all the little things like this that people at Memorial did to make my experience a less frightening, more pleasant one.
After Surgery: Memorial's Special Care
Fortunately, the procedure was successful. Unfortunately, when I woke up in the recovery room I was in a considerable amount of pain. Thankfully, at Memorial they allow you to see your family members right after the surgery, which, for me, meant that my mother and husband were there when I came out. It was wonderful to see them, to know that I had made it through.
My experience that night in the intensive care unit was unbelievable. First, the fact that Memorial has an Intensive Care Unit devoted exclusively to brain surgery patients was very important to me. Then Wayne, my ICU nurse, was phenomenal. He was so warm and solicitous, and he did everything within his power to make me feel calm and comfortable -- my parents still rave about him!
I vividly remember a female staff member who came in the middle of that same night to give me a sponge bath. There I was with the turban bandages on my head, an EKG strapped to me, special boots on both of my feet, pulsing my legs to guard against blood clots -- I felt so achy -- and here comes this woman with a tub of hot water. She bathed me wherever she could find a bare patch of skin and it felt wonderful. It was one of the many little things that show how much they all care.
When Dr. Gutin came in to check on me the following morning, I stood up and said, "I'm standing, can I go home now?" He laughed and said, "Not quite yet." But I set myself a goal. I told myself that I was going to be out of the hospital sooner than anyone else had left before. I was determined to get through this and to get better. I firmly believe that a positive mindset is so important to your recovery.
Recovery: A Gradual, Sometimes Frustrating Process
I was allowed to go home on the Thursday following the Monday surgery. Once I was back home, my biggest frustration was not being immediately able to lead my regular daily life. I became very dizzy the first few days, which was extremely frustrating for someone as active as I am. Something as simple as rising in the morning to wake my daughter, which is something so tiny, you don't even think twice about it normally, was now a chore. These were my new challenges.
In general, my appearance, post-surgery, caused some problems, especially for my daughter. We had been trying to prepare her, saying "Mommy won't have any hair for awhile when she comes back." But I was very bruised and my left eye was swollen shut. We tried telling her that it was just like a Halloween mask, but the first moment she saw me, she started crying hysterically and ran out of the room. When my husband chased after her, she told him, "Mommy looks like a scary monster!" He finally convinced her to come in and I told her, "Sweetie, I'm fine. I look silly right now, but it's all going to get better." And it did. Every day she'd come in and the bruising and swelling would have retreated a little.
I met with Dr. Gutin again, two weeks after the surgery, when I went in to have my stitches removed. As I was getting up to leave, he gave me a big hug and said, "You look great. I'm so glad to see you, but I hope that I never see you again!" It was one final example of his warmth, his genuine warmth, which was there throughout the entire process.
Lessons Learned: Appreciate Every Minute
All in all, when I look back at my experience, I feel so lucky. I appreciate every minute of every day differently now. And if I were to give advice to someone else going through a similar experience, it would simply be to stay positive. Decide that no matter what happens, you are going to get through it. Your outlook is hugely important, both to how you do and to how everyone else deals with you throughout the process. And if you go to Memorial, you'll know you're not alone. It's a special place where everyone understands. That makes all the difference.
