I know that once I start writing this story, it will pour out of me with a frenzy and a fever and I won't want to stop writing. I've been writing it for months in my head, but haven't typed one word of it until now. But it's a long story, so I need tell it in parts.
This past July, I was sitting at my dining room table writing an article. The kids were gone for the week, their very first sleep away camp, and Tim was at work. Half way through the article, I noticed there was a small blurry blind spot in my field of vision. I blinked a few times but it didn't go away. I kept writing, but it started to bother me. I got up and went for a walk and it stayed right there. It was like a flash-bulb had gone off in my eyes and left a spot that didn't fade away.
This blurry spot got bigger and more prominent over the next week, sort of like a migraine aura that didn't move. I went to my optometrist to get checked and she couldn't see anything wrong with my eyes. She gave me eye drops and told me to call her in 2 weeks. I carried on with my happy life. I picked up the kids from camp, who had an absolutely amazing week.
Tim and I flew to Key West to see our dear friends Meredith and Sam get married.
While in Key West, in the midst of celebrating love and exploring and going scuba diving, my vision continued to get worse. I noticed that colors looked a bit off, and nothing was sharp. On the drive back to the airport, I called and made another appointment with my eye doctor.
The next morning, my doctor ran more tests and again told me there was nothing wrong with my eyes. She had no explanation. She said I could see a neurologist if I was worried about it, but that may take 6 months to get an appointment. I called my doctor and she decided we could skip the neurologist and go right for the MRI of my brain, which is what the neurologist would likely order. I gulped. "What are we looking for in my brain?" I asked. She said we wanted to see if my optic nerve was inflamed. I said: "And what would that mean?" And she said: "Let's just wait and see what we see." I had a bad feeling.
That weekend, we went on a little family vacation to Sugarloaf. The upcoming MRI, scheduled 3 days away, weighed heavily on me all weekend. I hardly slept. Lying in bed in our condo, I told Tim I was afraid I was dying. I was already fearing the worst almost every moment, except for the rare moments I told myself I was being ridiculous and shook it off. We still had fun, but I was not relaxed.
On August 1st, back home at our lake house, I took this photo of the kids riding behind our new boat. This was my life on August 1st.
I had the MRI early in the morning on August 2nd. The MRI wasn't as bad as I feared (I'm claustrophobic). My mom sat in the waiting room and we went out for coffee after. My brother and sister-in-law, Hamilton and Mary, were visiting from Ohio, and we were all spending the day at the lake. Kids were swimming. Adults were lounging, reading in the hammock. I made enchiladas for dinner and my mom and my mother-in-law Ansley came over. I had my phone in my hand all day, waiting to hear from my doctor. When 5 pm came and went, and I hadn't heard, I thought that was a good thing. I gave up on hearing anything that day. After dinner, I was sitting at the table on our deck showing Hamilton and Mary pictures of Meredith's wedding when my phone lit up with my doctor's number.
I walked out to the front of the house to take the call ; it was a doctor who was covering for my regular doctor. She said she wanted to go over the scans from that morning. Something in her voice. She said it did not look like my optic nerve was inflamed, but... she paused. I went weak in the knees. She said that it looked like there was a mass. A lesion. On my optic nerve. A glioma. An optic glioma. This is a kind of brain tumor, she said.
She kept talking, but by this time, Skyler and Reed, who have a very weird and incredibly sharp sensor for trouble, were next to me, one on each side. "What mama? What is it?" I pointed to the house, urging them to go back inside. I thought I might throw up. They each grabbed on to one side of my shirt and walked up and down the road beside me. I tried to concentrate on what she was saying. I asked some questions that I don't remember, I think about what I should do next. She told me I needed to get in touch with a neurosurgeon in the morning. I asked about treatment. She said "probably surgery, chemo, and radiation." She kept saying: "I'm so sorry, Emilie."
I was full-on crying now.
"What is it, mama? MOM! What is it?" Skyler and Reed were both crying, searching my eyes for an explanation about what could be this bad.
I asked the doctor one more time: " I'm sorry, but what am I supposed to do tomorrow again?" Call a neurosurgeon. Right. Okay. I hung up, moved onto the front porch, Tim was there, the kids looking up at me. I somehow managed to get the words out. "I have a brain tumor."
The kids sobbed. Tim hugged, silently. I knew what he was thinking, but I also knew the kids didn't know what these words meant. What they were reacting to was me crying. "What does this mean, Mom?" They were desperate, panicked, because I was. And here is what I remember that I said: "It means that I have a battle to fight. And I need you guys to help me. We can do this together." I know I said that last part, because over the next couple days, Reed kept saying to me: "We can do this together, Mom."
I will never in my life forget the look on my children's faces on the road in front of my house on August 2nd.
The next thing that had to happen was I had to walk through my house and onto the deck where Hamilton, Mary, Ansley and my mom were waiting for my news. I turned the corner and I'm sure my face said it all. The kids' red, teary faces said it. "I have a brain tumor." I sat down and the kids sat on top of me. They stayed on top of me, their weight pressing me into the chair.
Everyone alternated between hugging, crying, shaking heads. "I can't believe it," everyone said. My poor mom. Here we go again.
Over the next few hours, we sat in silence. We stared. It was a beautiful, sparkling, thick-of-summer kind of night. I suggested we take a walk with the kids. I listened to myself saying upbeat things to them like: "We totally can do this. It's going to be hard, but we can do this, right?" They squeezed my hands and stayed as close to me as they could.
I called my sister and said the words: "I have a brain tumor. " (My brother was biking in Peru, so we kept him out of the loop for now.) We told Hillary and Ellis. I called my friend Sandi who is a nurse anesthetist and knows all the local surgeons. She was super calm. She said I would likely have surgery quickly and she said "They will pop it right out." I remember thinking that made it sound too easy, but that her matter-of-fact reaction to my news was extremely reassuring. She told me later she was so worried that she didn't sleep that night.
I don't know how I felt that night or how I didn't lose my mind. I can't totally remember. I alternated between crying and feeling numb, surreal, dreamlike. I had an image of myself with my head bandaged up from brain surgery that I couldn't shake. I somehow got the kids to bed. I somehow went to bed. I didn't sleep, but I went to bed.
That night, Sandi had told me about a neurosurgeon that she worked with who she said was amazing. We will call her Dr. J.
Sandi had emailed Dr. J to tell her my situation, asking for advice, because apparently this is a tricky place to have a brain tumor. Sometime before 5 am, Sandi texted me and told me to call her when I got up. I was up.
Dr. J had agreed to look at my scans and give me advice about which surgeon I wanted to consult. She was going to call me sometime that morning. I got up and started sweeping the kitchen and making breakfast, folding towels, wiping the counters over and over. I couldn't stop moving. I couldn't sit down. When Dr. J called my cell phone, I went out the front door again to walk up and down the road. She had looked at my scans, and this is what she said:
She said it looked like either a small optic glioma (tumor) on my optic chiasm (the spot where your optic nerves cross) but it COULD be just inflammation of the optic chiasm, which might be Optic Neuritis. Optic Neuritis often is a first indication of Multiple Scleroses, so she asked me some other questions about MS symptoms, but I had none. She said you couldn't tell by looking whether it was a tumor or inflammation. She said the only way to determine what it is would be to biopsy it, but that you couldn't biopsy that area without taking away some more of my vision, so that the recommendation was going to be to wait 3 months and rescan, unless my vision got worse.
I was so confused. Wait, I don't have to have immediate surgery? We aren't headed to the hospital right now? This might NOT be a brain tumor? Then why did the first doctor phrase things so differently?
Dr. J told me that I was going to have to wait to see. Wait to see if I have brain cancer? Aren't there any other tests? I actually can do nothing but wait for 3 months?
Yes. Wait 3 months. Unless anything changes. She gave me her cell phone number and told me to call or text with questions.
Did I feel better knowing my diagnosis was unclear? Actually, no, I didn't. I guess I was glad there was not urgency, but on the other hand, I had stayed up all night gearing myself up for swift action and then everything stopped. I was left with nothing to do except fear the worst. I walked back into the house thinking "What do I actually DO right now?" Getting through the next 3 months was one thing. Without any kind of a plan, I didn't know how I would get through the next few hours.
Later that day, Tim had taken the kids out on the boat; they were very relieved about the new plan to "wait 3 months before anything happens," and I was putting on a brave face and letting them enjoy their relief. I found myself with a quiet moment in the living room. I did the thing everyone told me not to do, the thing I knew was a bad idea, but I couldn't stop myself. I picked up my phone and googled "optic glioma." It took me about 3 seconds before I saw the words I wouldn't be able to un-see.
"Optic Gliomas are often benign in children, but are almost always malignant and aggressive in adults." I clicked on one more link and saw the words: "Optics Gliomas in adults are rapidly fatal. Death in 1-2 years."
I frantically clicked out of the website and threw my phone on the couch as if it had burned my hand. I was going to be sick.
In the next fifteen minutes, before my family came back into the house, I had a decision to make. Lose my mind or do some slow breathing. I was going to have to find a way to think about this that wouldn't destroy me. The 3 months of waiting loomed ahead of me like an ugly monster that I had to look right in the eye. I splashed cold water on my face and shook my head back and forth, trying to clear out the image of those stupid words on my phone. I looked in the mirror and said out loud: "Stop it. This is not happening. You are not dying. "
Next chapter: Part Two, The Waiting.