Brain Fog

I’m currently writing this post from my back porch – there is just enough sunshine dappling my chair to be warming and soothing, but not enough to feel harsh on my sensitive eyes. It’s been nearly two weeks since my SRS brain radiation, and barely a month since the brain MRI that set all of these events into motion. I have been meaning to update sooner, but, as many of you know, being the recipients of frantic “sorry, I’m still behind!” emails from yours truly, things have moved both lightning-fast and slower than molasses. Brain metastases apparently set off a flurry of appointments, scans, and procedures to both get the lesions treated and ensure a proper care team and care plan is in place going forward. All of that happens within a span of days – from the time we found out about the brain mets to the actual SRS radiation treatment, only 21 days had lapsed – days full of scans, further scans and treatment simulation, additional scans to follow up on other things, appointments, meeting new oncologists, but also the rest of life. I say this not to temper the busy-ness of anyone else, but in my partial disbelief of the sheer volume and enormity of what our family has been through. While this procedure is over, there is an element of that increased frenetic schedule that we will have to absorb into our new normal. We do what we can and process it, absorb, it, mitigate it, but the weight of it will never fully cease to exist.

While I plan to circle back at some point and talk in more detail about the process of SRS brain radiation, this is not that time. I  am currently struggling – more than I expected and more than I realized – with the implications of the brain metastases. I can give lip service to the elements of our new normal, and bluff that we can handle it, but truthfully, it has been extraordinarily difficult news to process. One thinks of the brain as a somewhat impenetrable fortress, encased in the skull bones and the dura mater, guarded by the blood-brain barrier, and working, processing, and pivoting to adjust in extraordinary circumstances. The realization that those strongholds have been breached, by tumors, no less, eschew all of the seemingly impermeable fortifications we hold in our minds.

The preparation process for SRS brain radiation was such a whirlwind that I didn’t have – or didn’t allow myself – space to process, to understand, to recognize the gravity of brain radiation. “You ain’t never the same when the air hits your brain” is common saying among neurologists, and rings true, albeit to a somewhat lesser extent, to radiation. When anything – beams of radiation included – find a way into the channels of the brain, even the most precise of treatments cannot leave the original structure untouched. I had gone into the procedure steeled by adrenaline that had carried me through the previous few weeks. But as I laid down on the radiation table and felt the locks click my face mask into place, I began to process, to understand the vastness of this procedure.

I had no metric to process how much time had lapsed, and everything in the room was quiet, still, and dark. My head was clipped firmly to my personal mold, and I began to feel the pressure of the face mask on my forehead. I wondered to myself what parts I could lose, lying on that table. What parts of me that make me, well, me, might be gone by the end of the treatment. I am fortunate that these lesions are in areas of the brain that are not critical to many of our activities of daily living, but equally important, they are not in parts of my brain that create the unique confluence of characteristics that give me my personhood, and make me the unique human being that I am. What if I lost the ability to speak, or write, or remember faces or names? What if I lost memories? One of the most difficult parts of these sort of things is not the clicks and hums and buzzing of the machinery. Even the banging and shaking of MRI machines feels less intrusive than the isolation, the nakedness of lying on a table, alone, with the innermost parts of your body displayed on a screen in another room. The loneliness, the quiet, the solitary element of it all is so unsettling to me. I focused on my breathing, and registered each red light flashing over me, each buzzing of the radiation beams like an insect in my ear, each jarring movement of the table as it shifted, then clicked into place again, restarting the process.

At last, it was finished. I felt nothing – there was no pain, no incision, no marks on my head save for the indentation of my face mask on my forehead. But I knew that there was change. The poet Adrienne Rich once said “the moment of change is the only poem,” but I struggled to see the poetic in that present situation. Slowly, and less groggily than I had expected, I sat up, after my head had been unclipped from the face mask, and walked out of the room, and into the adjacent bathroom, where I found myself staring back at my reflection. I looked intently back at myself, and into myself, and wondered what had changed – and what would change. Whether what, if any, fundamental parts of my personhood had been altered. I looked back at the face in the mirror, and asked myself who was still there. The face reflected in the glass looked back at me, its eyes asking me the same questions. I looked the same, but the face looking back at me had the same raw emotions welling up in its eyes, and tears spilled out, in an uncontrollable deluge of fear, grief, trepidation, and also, relief. I was still here. I am still here.

I am changed, fundamentally and indelibly, by forces that I never thought I would face. But that moment of change is yet another pivot, another detour, another hallmark of survival. That moment of change can still be my poem, because I am writing it with my existence.

8 thoughts on “Brain Fog

  1. Mad props to you, my friend. You have faced down such a difficult detour in the road with grace and courage. No, you won’t be the same, none of us with this awful disease are the same. However and at the same time, the magic is still there, waiting for you. Love and light to you and your family.

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  2. Emily, you describe this so well and with raw emotion. It is frightening to think about our brain, our mental faculties and cancer existing within it. You are processing it and healing. I’m always inspired by you. All my love my sweet friend.

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  3. Beautiful post Emily. This cancer takes so much from us. I’ve thought of you so much, sending thoughts,prayers and strength to you and your wonderful little family. I’m so glad to see you came through it okay.

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  4. Darling granddaughter, we think of you each day and send our love-thoughts. Having fought cancer twice (prostate, ended by surgery, and breast cancer with 7 metastasized lymph nodes + 2 surgeries) I have some feelings for what you are enduring. I had 6 weeks of radiation , 5 days a week, and the burning solution to my cancer still nightmares me. Brave husband and son will help sooth your anguish, we know. Family love is the best antidote.

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  5. Nothing can fully describe or give justice to the power and awe of your writing. Your words speak to the soul. I hope the whole world gets to hear what you have to say, Emily.

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  6. Your story is so very moving. I wish you well. I had a brain tumor removed from my frontal lobe (right) in October, 2015. I had been diagnosed with breast cancer, was finished with chemo, radiation, and two lumpectomies and was not getting over it. Finally, they did an MRI and discovered this large tumor on the outside of my brain. By then, I had totally flat affect; I did not worry at all when they said craniotomy. Now, almost 4 years later, I keep having yearly MRIs that tell me my brain is clear. However, I have bone mets (just discovered), have started new meds, and have yet to hear what else I will need. It’s an ongoing process of scans, repeat scans, MRIs, docs, meds, etc. I feel for you and I know what you’re going through.

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  7. Oh yes. My husband has lung cancer mets to the brain and had both a craniotomy and then gamma knife treatments. (I have breast cancer, but so far am holding steady). He began falling and then having seizures. Treatment worked and has given him eight months, but he can’t figure out why he sleeps all the time, is still tired and can’t really concentrate on much. I keep trying to explain the magnitude of what he’s been through. I’ll share this with him. I think it will help. Sending you love and stamina!

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