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?
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.
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