Sunday, December 11, 2016

Updates and Christmas Tidings

Since my last post, not much has changed in terms of my health, but a lot has changed in terms of my perspective.

It turned from fall to winter out at the lake; we have officially and totally settled in to our new permanent home.

In October

And now, December

My vision has not improved overall, though I have had a few stretches of days where I thought it was much better, only to return to the original problems a few days later (blind spot in my visual field, extreme sensitivity to fluorescent lights, and color distortion). I've had the same experience with headaches.  About a month ago, I went 20 days in a row without a headache (yes, I keep track), and now they are back. Except for that glorious respite, I have had a headache every day for four months now, and I have to admit, it starts to beat you down after a while. Similarly, it's hard to not think about the vision problems when they are right if front of you for every waking minute.

I have seen a neurologist again, and I have a plan to rescan in February. At this time doctors will be looking for size of the lesion as well as any more evidence of MS. No one seems quite sure whether the headaches are related to the vision problems. My regular doctor tends to think it is still tension headaches based on the stress of this experience. I will see another ophthalmologist this week and I'm hoping for some new insight.

I vacillate between having the patience to ride this all out, feeling generally optimistic, and getting really mad and frustrated and wanting go demand that someone give me some answers. Any kind of chronic condition like this has a way to mess with your head. I can't remember what it feels like to not have a headache.

It is clear from all the conversations I've had with doctors and all the reading I've done that my condition is rare and atypical, so I don't neatly fall into any category and there is no easy explanation for my symptoms. Most cases of optic neuritis would've cleared up by now. And because my vision hasn't worsened over time, and because the lesion got smaller from the 1st scan to the 2nd, it is unlikely that I have a brain tumor. I would still really like to have some guarantees and I just have had to learn to live without them.

I had to stop waiting to feel 100% better before moving on with my life. I learned that I have a headache if I lie on the coach watching Netflix, and I have a headache if I go to the gym, so I might as well go to the gym. I'm back to working out at least 4 and mostly 5 times a week. It feels so good to gradually get some muscle tone back. I'm cooking and baking and I have all of my Christmas shopping done, and for the most part I feel like myself again. Me with a headache.

Right now I'm sitting in my living room watching the lake freeze (literally, you can watch patches of ice grow by the hour), and the sunlight is pouring all over my lap and the Christmas tree is all sparkly and full of our weird collection of handmade ornaments. Tim is off running errands and the kids are with their dad for a few more hours. I made granola this morning after going out in the 11 degree morning to run. I have had this whole day to do with as I please because I was so vigilant/obsessive about getting my Christmas shopping all done before December 1st (I mostly succeeded) and I am super thankful to be nowhere near a mall right now.

I am most certainly feeling incredibly grateful and lucky to be here during the Christmas season surrounded by my amazing friends and family. I am not exaggerating or being trite when I say that I'm thankful for every single day.  I'm thankful for every chance to girl talk with Skyler or watch Reed score points in his basketball game. I'm thankful for Hillary and Ellis and the tremendous love that has grown between us. I feel lucky every time I lean my head on Tim's shoulder or watch the little kids jump into his arms when he walks in from work.

I am loving my students and feeling like I have more to give them now than I did all fall.  I feel lucky to be here and able to shop for Christmas, to have energy to exercise and teach and live a productive life.

Here is what I'm not doing: I am not stressed or complaining about being busy. I am not getting worked up about making everything perfect for Christmas. I am not letting myself get overwhelmed by little stuff. I wish it didn't take such a scare for us to all realize this: we are all a phone call or a test result or a doctor's visit or an inattentive driver away from everything changing.

I wrote basically the same thing in my last post, but I'll say it again. Are you bogged down by busy schedules and long to-do lists?  Just remember you are here.  You are here with your families and not one other thing really matters, so stop. Hug your family.

Here are some highlights of our time since October.

We spent many fall weekends watching Ellis play football, one of my favorite things to do.
Cold days, warm hearts.
We spent a weekend in Portland with some of our very favorite people.Also, yes, Skyler got braces.

My brother Chris came from California to spend a week with us. We went hiking on the island.

Our love filled Thanksgiving
Our friend Matt turned 40, and because I look terrified in this picture, I'll include one more.

Not terrified! Just happy to be out with friends.

The biggest change from October to now has been that I'm willing and excited to make plans for our future. We are indeed all going to Puerto Rico after Christmas, and we have booked ski trips for February and March. With or without a headache, I'm going out there to keep on living.  

But for now, I'm just happy to be right here. 
Our home on the lake, Christmas tree in the window.

Merry Christmas, Happy December, and many, many thanks to all of the people who have shown their concern and sent love in so many forms.  


Saturday, October 22, 2016

Part Three: Releasing the Grip

Here are Parts One and Two

I am overwhelmed by the outpouring of messages and responses I've received after writing this story. I have read, and continue to read, every Facebook comment, text, and email that came pouring in last week, many from friends from all corners of my life, and many from people I've never met. Some people offered sympathy, some shared their own scary stories, some asked questions and offered advice.  Thank you, all!

Yes, I'm still waiting it out. I have no new information since I wrote Part Two. I will have future MRIs, and future visits with neurologists to test for MS. I still have the blurry spots in my vision, but they really only bother me when I move around a lot, get hot, take a hot shower, or when I'm under fluorescent lights. Optic neuritis can take up to 6-12 months to heal, and in some cases the vision problems never go away. Time will tell.

Though moments of fear bubble up here and there, I am feeling much more positive now. I'm simply not going back into that very bad place where I was so afraid, so I'm choosing to believe I'm getting better. And in turn, I'm feeling better.

While I used to be a person who exercised (bike, run, swim, or lift) 5 times a week, since mid July when this all started, I have done nothing. I was too tired and worried, my head hurt, and my vision bothered me too much. Two weeks ago, I ran one mile, and it was hard! This past week, I ran two miles TWICE and have gone to the pool before work TWICE. Small miracles.

I am so grateful. I can't believe the life I get to have. I get to live on a lake in beautiful Maine and now I'm free to make plans for nights out, trips to warm places, and races I want to run. Everything I thought I appreciated before has even more sparkle now; even the most mundane moments in the kitchen with my family feel like scenes from a movie.

I've been replaying many of the moments from the last 3 months, and I'm noticing a different feel now that I'm at a safe distance from the pain.

The kids live such a big, brave life. I normally would've stayed in the boat and watched, but this summer I jumped too. 

The people around me.
Within 15 minutes of receiving the brain tumor call from my doctor, my mom said to me: "I wish I could take this from you. This should be me and not you."  I had zero doubt that she meant it, too. My mom is a cancer survivor herself, and we watched as cancer swiftly took my dad away. And still my mom was front and center, sweating out every MRI result and doctor's appointment right with me. I don't think she slept through the night once in those 67 days. Such is a mother's love.

I talked on the phone to my brother and sister much more frequently than I usually do. I got sweet and funny cards in the mail. My English colleagues sent me to the spa. I got flowers from several friends. My friend Sarah sent me magical unicorn/rainbow socks. I got daily texts from dozens of friends and family members.

I always say that my husband Tim is a highly evolved human. By that I mean that he doesn't overreact, he is calm in a crisis, he delays judgment, sees the good in all situations until he receives information to believe otherwise. Sometimes I'd know that I needed to cry from the weight of carrying all of this, and Tim would sense this and help me finish dinner or get the kids to bed, wait until we had a quiet moment, and sit next to me. I'd say something like: "I can't do this anymore," and complain about being scared or how I just needed to know what it was I was fighting. He always listened,  and then he'd say something like, "I know. This totally sucks. I can only imagine how exhausted you feel."

He never told me not to worry, or how not to feel. He never made me feel like I was doing this wrong. He never pretended to know the answers. But he always ended our conversations firmly:  "We can do this" or "We've got this."  I was so comforted by his confidence. Somedays I felt as though he was reading from a script I had unconsciously provided, as if I could think: this is what I need you to say to me, and he would say it.

Reed and Skyler, ages 9 and 12, have been little pieces of gold. We did a pretty good job downplaying the situation to keep them from worrying. They had important things to do, like start middle school, play football, jump in the lake, play with their friends. But they told me in their own ways that they were thinking about my health a lot too.

One night I was lying in bed with Reed. We were in the middle of a story when he stopped me and said:  "Mom! Your glasses have a smudge on them!"  He took them off my face and ran to the bathroom to wash them. He was so bummed when he realized my vision was blurry even after he cleaned the smudge.  He also told me a few times that the night we got the brain tumor call from the doctor was the "worst night of his life" and that he wished it was "all a bad dream." Reed is a hugger and a cuddler anyway, but he has been extra clingy since August 2nd.

Skyler showed her concern by freaking out every time I stepped outside to take a phone call.  "What, Mama? Is it your doctor?" Other times she'd ask me questions out of the blue: "What was it like for you when your dad died?" "What do you think you'd do for work if you went blind?" And one day she came into my room very seriously and sat down on the edge of my bed holding my lap top. "Mom, why were you googling 'foods that fight cancer?'"

The kids knew I was having another "picture of my brain" taken that Friday, but I had told them we likely wouldn't get any clear answers yet. When I told them the good news that afternoon, I could see the relief spread over them.

We sat on our swing at the edge of the lake and I told them honestly how scared I had been, apologized if I had asked them to be quiet because I had a headache too many times. The three of us sat there and cried together, looking across the lake at trees bursting with reds, oranges and yellows. "We are so very lucky to have this life together," I said. We sat in silence for a long time and then Skyler said "I'm just so sorry you've had to be so scared for so long." I assured her it was all going to be okay now, that I wasn't scared anymore. We looked out at the water and squeezed our hands together.  A few minute later, Reed said: "Mom?"  I said "Yeah, bud?"  And he said "What's for dinner?"  And I laughed and cried and laughed some more.

Is this Brave?
So many of you commented that I was being brave or courageous in how I was dealing with this scare. BUT I WAS NOT. I was trying to express in my writing that I was scared out of my mind, and that I didn't stay positive, that I let worry make me feel crazy and paralyzed.

In my imagination, I had a brain tumor that was taking over my head. I dreamt about lava-lamp looking substance inside of me spreading and expanding. The fact that I developed an increasingly bad headache about a month after my first MRI that was unresponsive to pain meds was more evidence that I was indeed dying.

Is this brave?  I think maybe what is brave is when we, in the face of anxiety and pain, show up for our lives even when we want to stay in bed and cry.  The whole "I can't do this but I'm doing it anyway" approach to life. That is probably brave, yes, but what is the alternative?

Most of you, though, seemed to think the brave part was writing about it, showing myself stripped bare like that. I have thought about this a lot.  I had not spoken any of my darkest fears out loud to anyone before I wrote them. I know my loved ones were thinking the same thoughts during those two months, all the "What if she dies?" scenarios.  I know every parent has had these thoughts; mine were just more urgent because I'd been told I had a deadly brain tumor, and then told "well, maybe not."  Dying while your kids are young is every parents' worst fear. And I guess it was cathartic to get it all out of me by writing about it. Is that brave?

I am not a private person, and I don't hesitate to write about personal things. The writers I am most drawn to myself are women who strip it down and show themselves being real and vulnerable: Anne Lamott, Ann Patchett, Elizabeth Gilbert, Glennon Doyle Melton.  Life is hard and shitty and beautiful and messy, and let's please tell our stories honestly so we can connect and understand.  So yes, I was scared, and at times it got ugly, but at the very core of my fear is a mother's love so intense it could light a match. In part, I told that story because I was struck so many times by how much of my will to keep living was fueled by my need to be here for my kids.

Thoughts on prayer
Though I struggle to define prayer for myself, hearing someone say: "I'm praying for you" was incredibly comforting to me. Whatever that means for the one doing the praying, I'll take it.

I don't believe prayer can stop a brain tumor. If that were the case no one would die of cancer or any other disease. I don't believe any one person can affect the course of a disease through prayer, but I do believe we can begin to heal ourselves with positivity, love, and attention on the right thoughts. When I pray, it is for a bigger, more open, more awake life.

When I found myself at my worst moments during the waiting period, the only single thing that gave me peace was to adopt an attitude of surrender. I would think:  I give myself up to you, universe, because I clearly cannot think my way out of this. Nothing I say, feel, or do is going to change whether what is growing inside my head is a fatal brain tumor. Whatever it is, it already is.

I had to give myself up to something greater than me, to trust that whichever direction this went, I would be taken care of.  Is this what it means to have faith? Because I never felt sure that I wouldn't die, but I did find some magical moments when I truly believed that I would be okay, in life or death. I actually had moments of clarity that my kids and Tim and my family would be okay without me.  These were fleeting moments, but amazing ones, and they didn't feel like defeat, just surrender.

Our living room chairs face our view of the lake. This is where I drink coffee and write.
My friend Kristina mailed me a book this week:  Help, Thanks, Wow by Anne Lamott.  In the first chapter, I found the perfect paragraph for me right now:

"Prayer can be motion and stillness and energy--all at the same time. It begins with stopping in our tracks, or with our backs agains the wall, or when we are going under the waves, or when we are just so sick and tired of being physically sick and tired that we surrender, or at least we finally stop running away and at long last walk or lurch or crawl toward something. Or maybe, miraculously, we just release our grip slightly."

When I was able to release my grip, I felt connected to something bigger, and that is how I prayed. I did this by sitting with my pain, leaning on my husband, mothering my children, walking up and down the road. I prayed by jumping off of the big rock in our lake, teaching my seniors to meditate, guiding them to write honestly and bravely. I prayed by imagining all the things I wanted to do when I felt better:  bake a bunch of bread, eat spicy food, jump off the dock naked, read 100 books, run another marathon, turn the music up.

You cannot go through something like this and not change your perspective on life. So few of the things we usually complain about really matter at all. Are you too tired to cook dinner? Your afternoon schedule of shuttling kids around is stressing you out?  But you are alive. You are here.

I am releasing my grip. My headaches are lessening each day, and I'm finding pleasure in just about everything I do. I'm thankful to cook dinner, to go for a run, to have a busy day, to put my head on the pillow at night and actually look forward to the next day.

It's so good to be here.

Friday, October 14, 2016

So This is How You Pray, Part Two: The Waiting

If you missed Part One, start here.

Let's review the facts up until this point, something I have done over and over since that original call from the doctor:  I have a lesion on my optic chiasm which is making me have blurry vision. The first doctor's interpretation was that it was an optic glioma, a brain tumor. The second doctor, Dr. J,  thought it could be either an optic glioma or optic neuritis, inflammation.  The course of action was to wait 3 months and rescan. If the lesion grows, we would proceed with a neurosurgeon and talk about biopsy.  If the lesion shrinks, we would treat it as optic neuritis, which may or may not mean I have MS.

I'm sure you are thinking what I was thinking and everyone else in my family was thinking:  Why on earth, when this might be an aggressive malignant tumor, would you wait 3 months to find out?

I consulted with two more local neurologists and went to see two specialists (recommended by Dr. J) at Tufts Medical Center in Boston. Everyone said the same thing:  You wouldn't want to biopsy the optic chiasm unless you had to.  It is major, risky brain surgery and will mess up your vision even more. 3 months is a reasonable amount of time to wait before proceeding.

Unless your vision gets worse.  Haunting words!

I have a canvas (made with love by Marlee) with the lines from a Mary Oliver poem on the wall of my bedroom, and the very first thing I did every morning was look up to see if I could read the words of the poem.

"so this is how you swim inward, so this is how you flow outward, so this is how you pray." --Mary Oliver

The poem looks a little blurry, right?  Sometimes it did. Sometimes I could read every word.  Is my vision better? The same?  Worse?  It really was hard to tell, and added to my angst about my condition. I was constantly covering one eye, squinting, looking around to see what I could or couldn't see.

Here is the thing: I am already an anxious person. I already have an irrational fear of brain tumors. I already have an intense fear of dying before my kids are grown. I am already psychosomatic and can convince myself of the existence of symptoms merely suggested to me. That is why this particular situation felt like a special kind of hell designed specifically for me.

I needed to try to live my life, put on a brave face for my kids, be optimistic. I did a good job at this about 40% of the time. The rest of my summer was ruined by worry. I was either crying, trying not to cry, or faking a positive attitude. Day in and day out. I somehow managed to keep moving forward, cooking meals, school supply shopping, getting the kids ready for school.

I considered taking a leave of absence from work but decided against it.  What would I do, sit home and google optic gliomas? Plus, I knew for my kids I needed to keep living as normally as possible. And so I did. But if I saw you out and about, and I was less than friendly, this is why. I couldn't small talk, I couldn't look cheerful or friendly. I might have waved but not come over to talk to you, or cut our conversation short, or avoided eye contact, and now you know why.

People would ask me: "How was your summer?"  And I'd think:  brain tumor, rapidly fatal.
The grocery store cashier: "How are you today?" Brain tumor, rapidly fatal.

"Fine!  Good! Thanks." I faked my way through the back-to-school frenzy. I welcomed new students to my classes. I did football games and cross country meets and open house.

But here is what it felt like inside of me. In the evenings, I would walk up and down the road at the lake, the same road where I took those early phone calls, and cry (with sunglasses on if the kids were around me). Honestly, I had to come to terms with the fact that I might die, I had to "go there." And I could have accepted my death if it weren't for Skyler and Reed. I am not actually afraid of dying. But my most primal fear, what brings me to my knees, is leaving them motherless.

Everything that happened in the last few months was viewed through the lens of "What if this is it?"

Was this my last first day of school?

Was this my last year watching Skyler run for her school team?

Was this my last football season?

Was this the last birthday cake I will make for my daughter?

I may have fooled you that I was keeping it all together, but I had so many dark moments. I had moments of total panic, moments of begging and pleading with the universe.

These kids. They need me. Please God, just give me five more years with them.

Walking up and down that road is where I would let myself really fall apart with self-pity and fear. Some days I was a mad woman. I felt crazy with pain and fear. I imagined all the insane things I would do if it could guarantee me more time with my babies. How close to the fire, how close to the edge of the cliff can a person get?

I was staring down two distinct paths.  One path, my normal life: Before the threat of brain cancer and death, I was surrounded by love and happiness. I am married to someone whom I cannot wait to see every single day. We had just decided to move to our lake house permanently and we were planning an addition and a kitchen renovation. We were planning on going to Puerto Rico for New Years. All four of our kids were thriving.

The other path: hospitals and scans and surgery and radiation and chemo and crying children. I'm ashamed to admit the places I let my mind go, the funeral, the obituary. I couldn't stop. I was cursed with looking into a future where my kids did not have a mom. I would have to shake my head to get rid of the image of Tim in our bed alone.

People told me to "Stay positive" and "Don't think about the scary stuff." Well, I love you all for saying that, but YOU try not to think about the 50% chance of having a terminal illness.  Go ahead.  For me, it was not possible. The two people in my life who seemed to truly not panic, to show the ability to delay their fears until we had more information, were my husband and my brother. They were both logical and pragmatic in their approach to this. Is this a male thing?  Because logical and pragmatic in the face of impending brain tumors I am not.

I would bang my fists on my forehead to make myself see clearly, to make the blurriness go away. (It didn't go away. It still has not gone away). I felt like an animal trapped in a cage, and I wanted to claw my way out.

And then, after these occasional fits of rage while walking the road, I would wipe my tears and pull myself together and head into the house to cook dinner or pack lunches or fold laundry, help with homework. I would organize the closet or sweep the kitchen again. So this is how I pray.

There were some days, even strings of days throughout this, when I never cried at all, when I just soldiered on somehow. If I started to feel overwhelmed, I would just focus on what I needed to do next (get up, brush your teeth) and then next (make the kids breakfast, pack school bags) and then next (smile, greet your students). Some days I didn't FEEL everything so deeply, which is a good thing, because I may have broken right in half.

Okay, fast forward.

In early October, I had a follow-up phone call with the neuro-opthamalogist that I had seen in Boston. She had put me on a 12 day course of steroids as an attempt to shrink the inflammation (if that is what it was), and I was now done with the steroids. 3 days of IV infusion and then a week of 60 mg of oral prednisone equals a whole other kind of special hell, and for anyone who has to be on prednisone for any length of time, I bow down to you.

That Boston doctor said the words that I thought I'd been waiting for since August 2nd. She said: "I think we should go ahead and rescan you early to see if anything has changed."  I swallowed hard. I did not react with relief. I actually reacted with panic. I was surprised by my own tears in this moment, but what I quickly realized is that I had spent every molecule of my energy since August 2nd trying to be okay with the not knowing. And faced with this turn of events, I had to be honest with myself.  I didn't want to know. I wanted to wait the 3rd month. I didn't want any new information. This was hard enough as it was.

But of course, I scheduled the MRI for one week from that day. My anxiety levels were through the roof for the rest of that week. Any progress I had made at getting used to living in the dark about what was happening inside my head quickly dissolved. Dr. J, the neurosurgeon who had made herself available to me for questions and encouragement, was on stand by to look at the scans for me and give me some feedback. On Friday, I had a teacher in-service but I had my scan done early that morning. Here I was again, trying to get through the day, holding my phone in my hand.

I expected to hear from her around 4 or 5 pm, but at 1:00, a text popped in from Dr. J. (May God bless this incredibly kind woman).

I ran out of my meeting and into the parking lot. I was shaking and sobbing and trying to send her message as a text to Tim but my fingers weren't working. This was the first tiny ray of sunlight to shine on me in a long time, and I came a little undone. I walked up and down the sidewalk in front of my school (always with the walking!) while I forwarded the screen shot on to my mom, my sister, my brother, my best friends, everybody who I had with me that day, standing by with their phones in their hands. Honest to God. I had a small army right with me.

Everyone wrote back with some version of: "AMAZING NEWS.  But can we get something a little more definitive?"

And we did, at 5:00 when Dr. J called me and confirmed the lesion had shrunk.  According to Dr. J, it shrunk "significantly" but according to the radiologist's report, it shrunk "slightly." (This is why I love Dr. J; I'm going with "significantly"). While they can't prove for sure it's not a tumor without a biopsy,  Dr. J said this seems to be looking like Optic Neuritis. The radiologist said: "Rescan in 3 months."  Dr. J said: "I'm so happy to get to call you with good news."

(I have never met Dr. J, though I did deliver flowers to her office today after school.  I am not even officially her patient. And she took such amazing care of me.)

So, where are we now?

I have moved away from total panic in my thinking, though it is not yet over. I feel reasonably optimistic that our worst fears are not true, even though I may not know for sure for a long time. I thought that with any good news from the brain scan, that I would feel like celebrating, that I would feel relief in my whole body. I imagined a whole group of us all going to Geaghan's for wings and beers, and ordering dessert. But I couldn't. I just went inward, wanted quiet.

Just like the time I found out the lump I had removed from my breast was benign, I actually feel very little joy.  I feel relief, yes, but more than anything, I feel beat up. I feel in shock from what we've had to go through. I still have blurry vision. I still have a headache every day. I still have fatigue. I still have doctors to see and tests to run, and I still have the threat of MS. 75% of people who get Optic Neuritis go on to get MS. All these things mean I really didn't want to have a party.

I spent the long weekend hugging my husband and kissing the heads of my children, taking walks and naps. I can feel, very very slowly, over the course of days, myself releasing some of the pain out of my body. I have a lot of work to do, as I have been clenching my jaw and tightening my shoulders for 67 days, and everything hurts. And once again, I cannot believe that a world exists where a mama may have to die and leave her children to grow up without her.

It is like there was a room that I had to live inside for 67 days, and even though I get to step outside of that room now, I can't quite shake the damage that was done by living there. I will never, ever be the same.

Next up:  Part Three

I am blown away by all of the love I have received through the sharing of this story. Thank you for reading. xoxo

So This is How You Pray: Part One

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.

"so this is how you swim inward, 

so this is how you flow outward, 

so this is how you pray." --Mary Oliver

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.

Wednesday, April 27, 2016

From Maine to Arizona, for love.

This post is for my Creative Writers who have been holding me to task for not blogging enough lately: M, B, D, K, and E, here you go  :)

My sister Liesel told me ahead of time that when I landed in Arizona I was going to feel like I was on a different planet, and she was right. In Maine right now we are just barely leaving winter behind; our trees are still barren and brown. I’ve been cold for seven months but as soon as I stepped off the plane and walked onto the tarmac, I was warm to the core. The air smelled like honeysuckle and sunshine even though it was evening, and the curving road that led us out of the airport was lined with palm trees. We drove 20 minutes to the resort and bam, just like that, I was sitting with my sister, barefoot by the pool next to a cactus garden with a mojito in my hand.

Sometime last year, Liesel and I decided it was time to initiate a mid-year sisters retreat, that the once-a-year visits during the summer just weren’t enough. She lives in Utah and I live in Maine, so as we were staring at the US map trying to figure out where to meet halfway, we thought: Kansas? Missouri? Kentucky? And no offense to Kansas, Missouri or Kentucky, we wanted some place warm and a little bit exotic. We chose Scottsdale, Arizona, which is definitely closer to Utah, but I was totally game to make the trek west, into the sunshine and into the loving arms of my big sister.

During our two days in Arizona (which is not enough, but all we had), we talked and talked like it was our job. When we are usually limited to 10 minute phone conversations while my kids are pulling on me, or her kids are waiting to go to soccer practice and dinner is simmering on the stove, two days of uninterrupted sister time (in the sun! surrounded by wild flowers!) was a welcome change. We caught up on all the regular stuff, what the kids and our husbands are up to, the stresses and joys of work, and updates on friends. And then we got to wander through all of the other stuff, the funny anecdotes that you never have time for on the phone, the good books we have read, the observations we can make about ourselves as working mothers. We know we are both missing out on a lot because we accidentally put down roots in places that happen to be 3000 miles apart. But we made up some ground in Arizona.

Some conclusions we got to by the side of the pool, in brief: our kids are changing in both predictable and totally surprising ways, we can learn things about ourselves as we watch our children grow up and other relatives age, we both worry like our mom does, and we are both blessed beyond measure.

I am an anxious traveler but I don’t want to be. So whenever I travel, I create more internal conflict by judging myself for struggling with things that I so wish could be easy. I don’t mind the actual state of flying; I watch out the window as much as I can, and I love the feeling of being suspended between two places. But I just don’t like being in a closed space with no exit, and airports with all of the security measures and lack of fresh air just make me nervous. But most of all, I am just anxious about getting anxious. My heart races and my palms sweat. Travel takes a toll on me.

I want to be this carefree woman who just flies over here and flies over there and doesn’t think twice about it. I am not. But here’s the rub: I used to be. I keep thinking I can get back to being that person, and therein lies the struggle. Maybe I know too much, or love too deeply, or care too much about the life I've created and I have become more sensitive with age. Maybe becoming a parent has changed me inexorably, made me more vulnerable in the world. I don’t know. But despite the fact that traveling has gotten more challenging for me as I've gotten older, I still won’t stay home. I will go anyway, and white-knuckle my way around the world because I don’t want to give in to the alluring pull of home/ the kids/ Tim, a comfort zone that is more comfortable than ever. Traveling reminds me of the quote I posted when I was about to do my first half-iron triathlon:  “I can’t do this, but I’m doing it anyway.” With anxiety, it is tempting to want to just stay home, live a small life, where everything is safe and predictable, but I resist. There are too many places to see, and too many people whom I love that don't live in Maine.

On the second day of the Arizona trip, Liesel and I drove to the Desert Botanical Gardens outside of Scottsdale. What a different land. The sun was high and hot by 9 am, the desert sand was dusty on my sandals, and there were way more species of cacti than I had ever imagined. I find the desert beautiful in a slightly haunting way; the earth is so dry and the vegetation so prickly, but the sky was a deep blue and the flowers smelled sweet. When I go west now, after living in New England longer than I’ve lived anywhere else (16 years), I realize what a New Englander I truly am. I prefer a lake, an old-growth forest, and a crumbling stone wall marking old foundations in the woods to any other landscape feature. It’s fun to walk around and point at a cartoon-looking cactus and desert bird, but at the end of the day, I find myself thinking about the cool breezes and damp earth of home.

But not so fast. Liesel and I had more to discuss, more drinks to order, and some incredible Mexican food to eat (oh my God, the pork belly tacos with cola and lime; and the spicy Mexican street corn; and roasted butternut squash tacos with spicy black bean sofrito, poblano, pickled jalapeƱo & cotija; and the skewered chicken in mole with sesame, peanut, cocoa & pepitas) at The Mission (voted best Chef in Arizona). We sat in the sun, each read an entire book, alternating between sun, shade, and pool. We ordered drinks from the very attentive wait staff. We ate chips and guacamole in lounge chairs.  We exercised not at all.

For people who don’t know my sister, I describe her as an older, wiser and much more relaxed version of me. I soaked up as much of her good vibes as I could at the airport before we parted ways for our separate gates and each flew home. She flew north, I flew east. We both returned home to our loving husbands and children, and our piles of responsibility, and unfortunately, to some late spring snow storms that didn’t help showcase our suntans. 

I am so thankful: for comfort zones, sunshine, window seats, and the greatest sister in the world. 

Thursday, March 3, 2016

Parenting Pre-Teens: I've got an eye-roller over here.

This post originated in the Bangor Metro, March 2016

Dear parents of pre-teen kids, can we talk? 

Have you noticed as our kids turn the corner from kid toward teenager that our job description has changed pretty dramatically?

My daughter is now 11 and has grown up so much in the last year. The tricky part of parenting her seems to be that I am supposed to simultaneously acknowledge how capable and independent she is while not forgetting that she still needs me. Some days I feel like we are walking such a fine line along this new boundary that one tiny step in the wrong direction, and suddenly she is running upstairs to her room, and I am eating Nutella straight out of the jar.

On any given day, it’s just not as easy to know whether I’m being a good mom to her. Even though I swore it was challenging at the time (the sleep deprivation!), the baby and toddler stages were a breeze in comparison. Am I right? As long as I fed her, smiled at her, got her to take a good nap, rocked her and patted her little diapered butt before bed, I felt like the champion of all the mothers. The parenting books I had dog-eared on my bedside table always told it to me straight. 
“At 18 months old, your baby should be able to: say several single words, shake her head no, point to one body part, drink from a cup and eat with a spoon.”
I always passed these little tests, giving me the false impression that I had this parenting thing figured out.

Now the answers to all of my parenting questions are “maybe” or “it depends” or “not a clue.” Should I follow her up to her room when she retreats there? Should she have an Instagram account because most of her friends do? Is it unforgivable that I nag her about deodorant and hair brushing? How candidly should I answer her questions about sex? Should I intervene when she thinks a teacher is being unfair, or let her sort it out? Can I educate her about food and exercise needs without giving her a body-image complex? Some days she wants help, some days she doesn’t, sometimes I embarrass her when my intentions are only to help.

Last week, she was upset about something, and we were lying on her bed. After some major eye rolling and frustration, made worse by my assumption she was just being “moody,” she said: “I just feel like I’m trying so hard to be a grown up but I still feel like a little kid,” I thought, well, there it is. My daughter actually has a pretty special knack for articulating how she feels, and I should have just asked her. I should have absolutely known that this push-and-pull between little kid and grown up  is at the forefront of every moment for her.

I’m starting to figure out that as she gets older, I don’t need the parenting books anymore. I have this tremendous resource right in front of me. Lying on her bed that night, I vowed to accept that I may not always know what she needs, but most of the time, she knows. And even when she doesn’t know, she needs me only to be patient, to listen, and to offer love, love, and more love.

My job now is to keep the lines of communication open. I need her to keep telling me what Susie said at school, and how she isn’t sure Jane is a good friend anymore, what she is worried about, and what she’s looking forward to. It’s true that sometimes she wants to be alone in her room, but other times she wants to hang out and be silly, and still other times she wants a heart-to-heart. I need to keep asking good questions, to be quiet and listen, to let some things go, to apologize when I get it wrong, and most importantly, to just be there for her.

Our growing kids are working especially hard to make sense of the world and all of these new feelings, bigger responsibilities, changing bodies, and complications with friendships that had previously been easy. The last thing they need is a parent who refuses to see them as the adults they are becoming.

Maybe parenting pre-teens and teens is challenging because we are clinging to the vestiges of being the one who had all the answers, who passed all the tests. It’s humbling to have your kid, who needed you for every single thing, suddenly morph into this smart and opinionated person who needs you less, or at least differently.

Just remind yourselves, and remind me when you see me in the corner with a jar of Nutella, that kids who want to establish independence, to do things their own way, are proof that we are, as a matter of fact, passing the test.

Monday, November 2, 2015

Things I never thought I'd say about football

I was not raised on football like most Americans. My father was a German immigrant and my mom is a musician who spends her Saturdays at the Opera. My parents only watched sports when their kids were playing in the game. I never watched football and didn't understand the people who did until I became a Throckmorton. Even then, I was still resistant, but when football is all around you, it starts to rub off.  
Once a babe, always a babe:  Tim as a UMaine Black Bear.
Ellis, my 6-foot 3-inch, 235-pound stepson is a linebacker for Husson University, and watching Ellis play football has (truly) become one of my favorite things in the world. Ellis is one of the most gentle and loyal and sweet people I know, but on the football field? He is big and strong, and you best get out of his way. Watching Ellis play has taught me to love football, and even more miraculously, to understand it. I swear to God you guys: I lived my whole life until I was in my 40s without actually knowing what a down was.

I now even like to watch an occasional football game on TV, and not just because of the hot wings. Living in New England, I caught the Patriots fever. I love Tom Brady.

I look forward to Ellis' games every week. On about half of the plays, I follow the ball because it helps me learn the game, but what I really love to do is follow Ellis and watch him knock people over. One time Ellis popped one of his opponents so hard that the poor guy's helmet went flying right off his head. I stood up and cheered, wanting everyone to see the 47 on my back so they'd know that the giant linebacker is with me, and I thought: Who have I become?

He looks mean, right?  He is not.

When Reed turned 8, he started talking about playing football. How could I be surprised?  Tim, who played college football and generally loves the sport, has been playing catch with Reed out front since they first met. And Ellis? Well, as far as Reed is concerned, the sun rises and sets on Ellis. Anything Ellis does, Reed wants to do too.

Ellis, age 4, with Tim looking on.

I spent a long time being undecided about whether we'd let him. I read all the concussion articles and worried about my sweet boy and his sweet head. But in truth I was more worried about the culture of football. I had heard that youth football coaches can be harsh with kids, that they push them hard and yell at them in practice. 

I asked Ellis: Did your youth football coaches yell at you?  
He said: Yes.  

I drilled him about his thoughts on the subject, and Ellis promised me that Reed could handle it, and that his tough coaches had been really good for him. Football, he explained, was the turning point that helped him figure out how to stay focused and disciplined in the rest of his life, specifically in school. Hmm. That was pretty convincing.

Reed told me we would “crush his dreams” (he actually said that) if we didn’t let him play football.

We signed Reed up for football.

I was more nervous than Reed at his first practice. I warned him this would be different than rec soccer and baseball, where Reed picked dandelions and sometimes stood on his head in the middle of the field, and that was perfectly okay. The other parents stood on the sidelines, shouting to their kids as they ran laps around the field in the hot sun. The kids were big and their dads were bigger. The parents chatted about drills and plays and positions, and I felt really out of place. I only participate in sports where no one touches anyone else. I listen to NPR and shop at the farmer's market. These were not my people.

Five coaches shouted commands at the team as they circled up for warmup drills. I resisted the urge to yell, “I love you, baby!” as he trotted out to join them. They started with "up-downs," where the kids drop to the ground on their stomachs, and then pop up and run in place, drop to their stomachs, pop up, repeat. The coaches allowed no slacking. If one kid didn’t do it right, the whole team had to start over. I kept my eyes on Reed as he struggled through the drill. I swallowed a lump in my throat. I was rooting so hard for him to keep up.

I admit it. I wanted to cry several times watching him out there getting barked at by the coaches. People told me football would “build character” for Reed, but maybe we could  just build character by baking cookies together and cuddling on the couch? I considered grabbing Reed, running right through the end zone and to my car. Out on that field, though, Reed amazingly followed every specific direction the coaches gave. He did not want to be the one who made the team have to redo a drill. Reed isn’t exactly an expert at following directions at home, but these coaches and their whistles had his attention.

At the end of that first practice, when he pulled off his helmet, I first noticed that his hair was soaked with sweat and his cheeks were blazing red, and then I saw his smile. The kid was seriously happy.

For the next few months, three nights a week, in all kinds of weather, Reed worked harder at football than I’ve ever seen him work at anything. He ran. He did push ups. He did up-downs. He got knocked down and got back up. He ran some more. 

I stayed for most of the practices, watched and learned alongside of the team, and talked with the other parents who, it turns out, are totally my people. All of the moms I talked to were also worried about the concussions and the intensity and the yelling, and we all watched our kids figuring this football thing out together. I made great friends on the sidelines while Reed made great friends on the field. I learned to check my own judgments about football and football moms, which is a good thing, because it turns out I was now a football mom.

Reed always looked forward to practice, and always walked off the field smiling. The coaches did yell commands to the kids in loud voices, but no coach was ever unkind to a player. One night I heard a coach yell at Reed: “Why are you hesitating on your tackles?  You need to drive through!” And I thought to myself: OK, that wasn’t very nice, but he’s right. Reed isn’t driving through. In the next drill, Reed tackled correctly and earned a coveted high five from the coach.

If he was told to run a lap because he had forgotten to put his mouth guard in during a drill, he’d do it and say later: “It’s OK, Mom. I deserved it.” How is it that my son was responding so positively to such a rigid, disciplined program? Ellis was right. This was a rite of passage for Reed, and it was truly surprising to see how he seemed to understand that what was hard was also good for him.

At the end of every practice and game, the coaches gathered the team into a circle. In these meetings, the kids took off their helmets and chugged water while coaches acknowledged what had been hard and specifically discussed what they did well. There was no gratuitous praising going on here; the kids were commended only when they had worked hard and executed what they had been taught. During these team meetings, it became obvious to the kids and the parents that these coaches truly loved our kids.

Football has its own subculture and takes some getting used to. I was lucky to have Tim by my side to explain what was happening and why, and Ellis to serve as living proof that football can provide direction and structure for a kid like Reed.

No one is more proud of Reed than Ellis.

Reed has grown up a lot this season, and no matter what happens with his future of football, he will always have this year. He learned that he can survive a challenge, and that hard work and perseverance pay off (the kid has some new muscles). He wasn't one of the best players, and he stuck with it anyway. He started off the year tentative and afraid to tackle (and his pacifist mama doesn't blame him). He got more confident and more brave with every passing week.  

photo courtesy of Tony Llerena

photo courtesy of Tony Llerena

This past Sunday, he played his last game, and it was by far his best game. The coaches all made a big deal about him and how much better he got. "You are on fire out there!" they said to him. It was perfect. Football isn't too tough for Reed. My boy can handle stern and direct instruction. He does not need to be babied or coddled. He can hold his own in tough situations.

Coach Tony was Reed's defensive coach.  He pushed Reed pretty hard and got huge results.
 Reed LOVES Coach Tony.

Reed's season is over and Ellis only has a few more weeks, so soon our weekends won't be consumed by bundling up and watching football games anymore, and I'll have to wait until next fall. Good thing I have the Pats and my Fantasy Football team to tide me over.