Meningioma – The Diagnosis

Ready for the EEG

Ready for the EEG

Dr. A (in a matter-of-fact tone): Your wife has a brain tumor.

My husband, Scott: (Aghast silence)

Dr. A (continuing matter-of-factly): Would you like some tea?

Scott: (More aghast silence)

Dr. A (noting Scott’s reaction, slightly irritated): You came to see a neurologist. What did you expect to hear?

Well, frankly, we expected to hear that we had just been wasting our time and money by seeing him, and he could find nothing whatsoever wrong with me!

At the beginning of this year, Scott and I had taken 3 months off work, and traveled in the Pacific, Southeast Asia, and South Africa. (Quite a few of the travel stories on this blog are from that time.) The traveling was as exhausting as it was fulfilling. So, when I came back to my regular life and job, I wasn’t surprised to be feeling tired. But the fatigue kept getting worse, and in a few weeks, I was sleeping 10-12 hours a night, and would still be drooping by mid-morning. I noticed my cognitive functions flagging. My natural problem-solving abilities were left by the wayside, which meant that I was unable to do much of my engineering job. My colleagues were used to my memory acting as a handy encyclopedia, and now I couldn’t even recall the details of my most recent projects. Worst of all, I stopped reading. This was shocking to me — ever since I learnt to read at the age of two, I had been addicted, unable to get through a single day without consuming a large chunk of printed words. I felt myself slipping away, and I didn’t know what to do. At the end, one morning I found myself sitting in my car at the intersection to work, not able to recognize it. I was terrified. My incredibly supportive co-workers drove me to where my husband could pick me up, and I went home for what would turn into a very long time.

My primary care physician said the trouble was either psychiatric or neurological, and recommended that I see both specialists. That’s what brought us to Dr. A that morning in early May. As he pointed out the tumor in the MRI scan to us, I was scared, of course, but in some ways, I was relieved. This was something real, not a ghost in the smoke and shadows of my mind. This was something we could cut out and throw away. It was in this frame of mind that I accompanied Scott to lunch.

Scott: I’m going to call work and tell them I can’t come in tomorrow.

Myself: Why? I’m just fine.

Scott: (Shakes his head disbelievingly and dials work)

Scott (speaking on the phone): Hey, my wife just got diagnosed with a brain tumor. I need to take tomorrow off.

Myself (mouthing insistently): I’m fine. Nothing’s changed.

Scott (on the phone): She says she’s fine and I should go to work.

Scott’s supervisor: Tell her not to be silly, and stay home with her.

As it turns out, I wasn’t fine. Whether it was the inflammation caused by the tumor pushing on my frontal lobe, or my brain chemistry due to the circumstances, I was in no condition to be left alone. I could not make it through the basic tasks of self-care any more. As Scott labored as my primary care-giver to find the right neurosurgeon, to fill out the mountains of paperwork involved, to keep me steady from day to day, other loved ones pitched in. Emily* spent hours with me, giving me moral support and accompanying us to the doctors. Jack* flew in from Michigan to keep me company for a few days, and helped S get all the medical stuff organized. Adam* came from DC and cooked up a storm, stocking our refrigerator with my comfort foods. Other friends cheered me up with visits, phone calls, and video chats. My parents abandoned all their commitments and flew halfway across the world to take care of me, so that Scott could return to work. Whether or not I was in a condition to express any gratitude, I was (and still am) overwhelmed by this show of love and support. (* Not their real names.)

There was some good news. The tumor appeared self-contained, and it was a type that is normally not malignant. But even after we found the right surgeon, before we could schedule the surgery, I had to go to what seemed like dozens of other doctors. An infectious diseases specialist, to make sure I didn’t have any neuro-spinal parasites. Another neurologist, to make sure I didn’t have any concurrent diseases of the brain. A psychiatrist. A neuro-cognitive specialist, who (un)helpfully unearthed that my IQ had dropped by 20 points. I was prescribed vitamin supplements and injections, and anti-inflammatory, anti-seizure and anti-depressant drugs.

The one piece of my mind still working was my sense of humor. I called my manager to announce the news.

Myself: So, all this time, you thought I was just quirky…

My manager (laughing despite himself): Oh, trust me, I still think you’re quirky!

We christened the tumor Betsy. I was much amused when a friend, upon hearing this, told me about a girl, also named Betsy, who had been one of the most toxic “friends” of her college years. I hated Betsy. I hated the things she made me do, and the things she made me unable to do. Betsy needed to go, and I was planning on having a giant celebratory memorial once she was gone.

[This post is the first in a 3-part series. You can continue reading about my surgery and recovery.]

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3 Responses to Meningioma – The Diagnosis

  1. Jeff says:

    Good luck! Your story has some similarities to mine. I hope everything goes well for you.
    -J.
    braintumorsite.wordpress.com

    Like

  2. Pingback: Meningioma – The Surgery | Cheer Up!

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