I'm honestly not sure how to start this letter. I've gone to write it and stopped so many times. I have no wisdom and nothing to offer here. I am just here to share what's happening with me and my experience because doing that is part of what makes me who I am. I want to give a content warning: cancer, surgery, medical stuff. Please take care of yourself and if reading this feels too much, it is more than okay to opt out.

I have a brain tumor. I say it to myself at least ten times a day. Trying to make sense of it. Say it out loud to myself. To nobody. To Chris. To my friends. It doesn't make sense. But these things never do. Telling people I love has been the hardest part. There is a part of me that wants to hide and hermit until I'm on the other side of this but a bigger part of me needs to share and talk and write. So, here it goes.

What you're about to read: how I found this, what's been happening, what's next and how I will be hanging onto being alive out of spite (calling this spite as a spiritual practice).

How I Found This:

A miracle. It is a miracle that this was found. For about a year and a half, I had some weird but random (to me) symptoms. Nothing major, nothing that set off alarm bells (to me) and nothing that was majorly disrupting my life. I had 3 small falls over the last 1.5 years-moments where I thought I was experiencing vertigo, where I felt off balance. A few moments of feeling clumsy, which is also not like me. Some more headaches than usual but nothing major. Every once in a while I would get this sensation that there was water spreading in the back side of my head. It would last two seconds. Sometimes a feeling of electricity in my brain-not painful, just a sensation and always brief. In January I mentioned all these weird things to Chris and he was like you need to see your GP. He didn't like the water sensation I described. His reaction was the first time I thought: hmm. Maybe this is a problem? But I was not too concerned. I have dealt with a lot of health things. It has been an extremely stressful past 6 months. We have been faced with significant death and grief. I chalked my symptoms up to psychosomatic stress induced.

My GP also didn't like the sound of the water in the brain I described. I remember her furrowing her brow and saying she wanted to order a brain MRI to rule out MS. At that point I became a bit scared. MS??? There's no way. I just kept thinking: It's gotta be stress. So much has been happening. I'm just exhausted and run down and grieving. Chris and I had to fly back to North Carolina for another funeral in February-his beloved uncle died. It was very sudden and unexpected and traumatic. That whole week as we were with family and doing funeral things I just kept thinking, "We just did this. I can't believe this is happening again." It felt like awful deja vu. I found myself staring at my husband, searching his face. Wishing I could take even an ounce of his pain from him.

One week after the funeral I went in for the brain MRI. I looked around in the waiting room at so many people who were so incredibly sick and prayed silently, bargaining with God: please let me be okay. I laid in the MRI with my eyes closed, breathing. And it was the first moment in my body I felt like something might really be wrong. "Anxiety" I thought as I am prone to it and medical settings, hospitals and scans bring on so much anxiety and worst case thinking. I stopped on the way home and got myself Baskin Robbins-I'm partial to their mint chocolate chip. I sat in my car eating it-I love a post doctors visit treat. Tuesday night I got the text alert that a test result was uploaded to MyChart. I open the patient portal and am reading through the scan: my eyes are looking at words I don't quite understand but I see a referral to a neurosurgeon at the bottom. I hand the phone to Chris-he quickly scans it and looks at me. "Do not google this." I nod and five minutes later I sneak out to my car to look up what the radiologist has notated as a possibility (they can say nothing for sure and the uncertainty in this entire process has been painful).

A tumor. A fucking tumor. And if it's the kind of tumor they think it is: cancer. I felt like someone had punched me in the stomach while death gripping my heart. I felt panic and terror spiral up my body, gripping my throat. I have the brca1 mutation-my cancer concerns are breast and ovarian. I had a double mastectomy in 2017. I did that so I would not get cancer. And now, there's most likely cancer in my fucking brain??? I cried. I said "fuck you" over and over out loud-not to myself, not to my body, not to my brain. To who? To God? To whoever might hear me? I'm not sure.

Within 48 hours I was sitting across from a neurosurgeon-the most terrified I have ever been in my life. Unsure of where this tumor is, unsure of how bad it would be. What I read online kept saying things like: 2-10 year life span for this tumor. I know not to google. I couldn't help myself. Am I going to die from this?

My neurosurgeon looked at me and I know my terror was palpable. I'm a big feeler and I can truly fill the room with what I'm feeling-for better or worse. "You're not going to die from this" he said to me. I squeezed Chris' hand, tried not to sob from relief. He feels pretty confident about what kind of tumor it is. He thinks it's slow growing. He is hopeful surgery will be curative (meaning no chemo or radiation) but we won't know until two weeks after surgery, when I get the pathology back. But I need brain surgery. It has to be removed.

He listened as I rattled off any strange symptom I had that I could think of over the last year or so. He said, "Most of these would not be from the tumor," and also, "I think you may have anxiety" to which Chris and I both laughed-OH YOU THINK SIR!?!?! BRILLIANT YOU ARE (but he is-he's a neurosurgeon). He told me he cannot believe this was found and typically it would be found if I was in a car accident and they did a brain mri or it had progressed and was much further along than he suspects it is currently.

A miracle. I am so so so damn grateful this was found and also: I'm angry this is happening. I'm so sad. I'm so scared. And many times during the day I am completely fine. I still have my dark sense of humor. I am still finding ways to laugh each day. I still find considerable time to fret about what I will be eating for dinner. And I mumble to myself "I have a brain tumor. I am having brain surgery. What the fuck is going on?"

What's Been Happening and What's Next:

I had scans last week of my spine. I was in the MRI for 2.5 hours. That machine sounds like an alien sending communication to a faraway place. I laid there and thought: they are looking for tumors, for metastasis. How is this happening? There is so much uncertainty. So many scans. And waiting.

2/3 spinal scans came back totally clear. The third has an artifact on a slide-could be nothing so we'll scan again in 6 months. My surgeon isn't concerned that its cancer and we're proceeding with surgery as planned. I go tomorrow for a specialized brain MRI to hone in on the tumor. I have a preop appointment and some more scans and visits. And then: surgery. Scheduled early April. The tumor is located on a part of my brain that impacts coordination, walking, my gait. There is a chance I will need rehab and physical therapy-that I might even need a cane for a bit. Again-so much unknown.

What I do know is that I have an amazing support system. I have spent the last several weeks reaching out to people to share, leaning into my discomfort around asking for support when I'm so used to giving it. I feel incredibly loved and supported. I am in great medical hands. Chris is going to be able to have time off work to be with me (a residency miracle). I found the best surgeon in the hospital to do it because I am a fierce advocate for myself and make myself a pain in the ass to get what I need.

As far as work, I made the incredibly difficult decision to pause my work and business for the next several months. I work with truly wonderful humans and I absolutely cried as I shared with them what was going on. They have been nothing short of lovely. I'm not sure how to describe what it feels like to put a major pause on something I have spent the last three years building. It sucks. But also: I know I need to take care of myself, to prep for surgery and to have ample time to recover. I really like what I do, I like who I get to support and I like to work. A few years ago I would have pushed through (and I did when I had my double mastectomy and it was not good for my physical or mental health) but this time I am listening to myself and the people around me who are encouraging me to take as best care of myself as I can.

Spite as a Spiritual Practice

I know this is all incredibly heavy-and while I am scared and feeling all the feelings please rest assured-I am still feisty and will find a way to laugh through this (and cry a lot-almost every day so far). When I found this out, one of the first things I thought was, "I will be DAMNED if I am taken out by this. There is no other wife for Chris. It's me. I did not support him in getting into medical school, residency, all this death and trauma to then get sick and die before the post residency life. I have not put in all this time and love and work for someone else to come in and reap the benefits. I will hang on out of pure spite."

Can spite be a spiritual practice? I will make it one. Watch me.

Additional Thoughts: I am not yet a good enough or evolved enough person to die young. I have more cooking to do. I can still be incredibly bitchy, I am quick to get worked up, I rant and rave about things that aren't important, I worry about the little things. I often do not take my own advice and sometimes ignore all the tools I know I have in my arsenal to support myself. My heart is not pure. I will not be going through this gracefully. In fact, I will never shut up about this for the rest of my life.

See? Not good enough to die young.

Last Thing:

Will you hold the vision for me/with me that the surgery is curative? That it is successful and I can walk and run and dance? That I am tumor and cancer free post surgery? That I can live a long and healthy life fussing about nothing important and bossing my family around as I am known to do?

And please send love to Chris, he's been through so much. And he deserves to have me alive (remember nobody else gets to have him-ha). But I'm not joking.

And love to my family.

Thank you and so much love to you all. Will keep writing. I know this was fucking heavy and intense. Even in the midst of all of this I am so incredibly happy to be alive.

Love love love you,

Alyssa

PS- Yes, you can totally respond to this. I know you might not know what to say and that's okay. As long as you don't tell me your mom's friend's neighbor had a brain tumor and they died. Or try to send me a supplement that cures cancer. Other than that, I welcome any messages at all ;)

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