On Sunday, January 17th, 2016, I was diagnosed with brain cancer. It’s not something I can say I was expecting.
Here’s what we currently know: The tumor is in the left, frontal region of my brain. They think it’s about a centimeter away from my language center, which means it is operable. That’s good. They don’t think it metastasized from another part of my body, so it’s very likely only in my brain. That’s good, too. It’s likely a type of tumor called a glioma. Gliomas come in stages 1-4. They won’t know for sure what stage mine falls into until they actually take it out in surgery and it’s tested. I’m not focusing on staging at all right now because no amount of speculating will make that question answerable in this moment. And I’m learning pretty quickly that I’m going to need to stay in this moment if I am going to be able to effectively undertake the journey on which my feet are now set.
This is how it started: I woke up feeling unwell, like I was going to faint – not a “lightheaded” kind of faint feeling like when you stand up too fast – it was more of an “unwell” something-definitely-isn’t-right kind of feeling. I’ve been going through menopause for the past year and had been diagnosed with very low testosterone, so I’d been taking a supplement periodically. That morning, I hoped maybe I was just having some kind of a weird hormonal feeling. So I took some testosterone and I actually started feeling better.
I made it all the way through the day – a drive from Charlottesville to Newport News and back to visit my in-laws – and did just fine. But when we returned home, I started feeling that bad feeling again – only this time, a little dab of testosterone didn’t help. I laid down on the bed and put my knees up, but continued to feel like I was going to lose consciousness. Pretty quickly, I asked Marshall to call the ambulance. He asked if he should drive me to the hospital instead, and I told him definitely not. I wasn’t sure I would make it.
When the ambulance arrived at our house, the muscles in my chest, arms and hamstrings were twitching uncontrollably. It felt like the twitching would run straight up my neck and yank the consciousness right out of the top of my head. I started to really worry when the ambulance technician started asking me questions, and it was hard for me to speak the answers. I thought I was having a stroke. Or maybe a heart attack. We later found out I was having a seizure.
I was scared. It was a struggle for me to stay conscious on the ride to the hospital. The ambulance tech was fantastic. I tried to joke some, and he pretended I was funny. He was also very calm and reassuring. But I knew something bad was going down. I had some pain in my upper chest. I felt nauseous. My muscles kept twitching during the whole ride, and I just had that horrible feeling that I was going to lose consciousness. Fortunately, the tech was able to tell me from preliminary tests that my heart looked like it was doing well. So I scratched heart attack off of my list.
When I got to the ER, they took me right in – no paperwork or needless waits. We went straight to a room and my nurse was right there with the ambulance tech. My muscle twitching had slowed down and I no longer had a hard time getting my words out, so that was an improvement. I was on an IV drip, but still felt extremely thirsty. I continued to feel like I might lose consciousness as more testing began. Someone mentioned that maybe I had an electrolyte imbalance. That is what I began hoping for the whole business to be – an electrolyte imbalance. It sounded simple and easily solvable. I liked that idea.
The doctor was there in the mix. He said my heart was fine – that this was definitely not a cardiac event. He also said that my blood work looked normal, so that blew my electrolyte imbalance hopes. Then he told me that they were going with a working hypothesis that this was some kind of anxiety or mood-related event.
Ugh. Volumes (but perhaps not enough) have been written about how our society views, treats, and stereotypes women; about how medical research takes the male as the assumed and unequivocal norm; about how women presenting with serious symptoms report having to “sell” their medical narrative to physicians in order to be taken seriously – more so than men do, at least. These are facts of life in the medical milieu for women in the United States. And as a female lawyer, if the truth be told, I’m not so sure I don’t have a fair-sized chip on my shoulder about it.
But the chip on my shoulder wasn’t the issue in the ER that night. At least, not really. When the doctor mentioned anxiety and mood, I wasn’t swayed. I felt certain of myself. I knew something was wrong. I trusted my own perceptions, the doctor’s anxiety hypothesis notwithstanding. My main hope at that moment was that the doctor would not send me home where I wouldn’t have access to immediate medical help when the unwell feeling came on again.
They did not send me home. Instead, they sent me for a CT scan. I had the dreaded feeling again as I was being taken to the scan – in seizures they call it an “aura” or a “premonition” – and I was grateful to know that, despite the provisional anxiety hypothesis, the doctor was going to do more testing.
When I got back from the CT scan, Marshall and I met with the doctor again. He said they were waiting for the radiologist to read my CT. But there was something different about the doctor’s demeanor this time. He was being cryptic, even evasive, and I told him so – pretty pointedly. Once a prosecutor, always a prosecutor, I guess – and I say this sheepishly because irritable pointedness is not the nicest tool in my communication toolbox. I suppose I may be excused, given how awful I was feeling. I was worried and I wanted to know more, so I defaulted into a kind of habitual cross examination mode. It’s not pretty, but it can be extremely effective. A Perry Mason-like moment ensued:
“So doctor, my heart results are still fine?”
“Yes, this is not a cardiac event.”
“And my blood work – still fine?”
“So do you still think this is an anxiety/mood disorder sort of thing?”
I knew right then that they’d seen something on the scan. The doctor left the room (probably relieved to get away from irritable me), and I told Marshall he needed to prepare himself for what the radiologist would be telling us when the results came back. Marshall protested, but it turned out that I was exactly right. The next time the doctor came in, he explained that I had a mass on my brain and that I’d be having an MRI right away to find out more.
A very large part of me was relieved. I was not going to be sent home to have another seizure on my own. I was going to be taken care of. My own perception of my experiences had been trustworthy and accurate.
But another part of me was still just plain annoyed by the initial anxiety hypothesis, and I just couldn’t keep my trap shut. I lit into the doctor about the male establishment being so ready to diagnose women with anxiety and mood disorders when we really needed to be listened to, heard and respected. I remember thinking at the time that I was trying to say it “nicely” to him, but I don’t think it came across that way. I did apologize to him immediately afterwards, to some very small credit on my part, I suppose. But still, I’d laid into a man who had done his job well, and who had helped us find out what we needed to find out, when we needed to find it out. Understandable, given the circumstances? Probably. But not my finest moment either.
The next step was getting the MRI, and it was done very quickly. Afterwards, they admitted me to the hospital at about 4:00 a.m. so I could get some sleep and then meet the neurologist in the morning to learn more about the results. Marshall stayed with me in the hospital, of course, and when we met with the neurologist the next day the reality of me having brain cancer slowly started taking shape. While Martha Jefferson was wonderful to us, we quickly decided to switch my care over to UVA. I was discharged from Martha Jeff, and we immediately began gathering our emotional forces to meet with the UVA doctors who were to become my surgical team.
The initial plan was to meet with my surgeon and oncologist, have a functional MRI, get my seizures under control, and have surgery – perhaps a couple weeks out from my diagnosis date. Yesterday, the plan changed a little when I was admitted to UVA so they could more comprehensively monitor the seizure activity in my brain. More on this experience in another post, but the short version is that I was released today and am back home (and glad to be here!).
In two days – this Sunday – it will be two weeks since my initial diagnosis, which hardly seems possible. The news still feels new each day – but I’ve realized that the physical component to this journey is just a tiny tip to the iceberg. The real journey is the spiritual and emotional one. Because we’re dealing with my brain, my mind, I have found myself asking “who am I?” Or perhaps more accurately, I feel myself being questioned by the universe itself: “who are you going to be?” It is not altogether an unpleasant question.
Indeed, surprisingly, I have to say the last two weeks have not been unpleasant in most ways. It is clear that am being carried in grace that is utterly not of my own making – like the froth of white bubbles on a wave washing into shore. I am being guided to let go and consent to God’s presence in each moment – and not to get beyond only the moment that is at hand. I see, perhaps for the first time more clearly, my utter and complete dependence on God – a dependence that I think has always been there, but that was well hidden by daily illusions of my own control.
I have been humbled by the enormity of my own need in this situation. There have been many things I have wanted to try to tend to for my family – emotional, psychological, financial, spiritual, physical – and many worries about how this diagnosis will affect all of us – my mother and father, Marshall and especially Hannah. There are so many questions, so many permutations of where this could go. And yet, in an inexplicable way, it feels like I already have all I need. There has been nothing but kindness given – it is almost impossible to see anything but goodness so far – such reaching out, such support, such love. To be living inside such a thing is like a whole universe being opened up before me and witnessed newly for the first time. And I’m stunned to hear myself say and truly feel – it is incredibly beautiful.
And yet, there is much to cope with, too. Much. I know I will need to ask for help for quite a while with this diagnosis, and I have spent the last week and a half trying to envision what this might actually mean. As I writer, I process my world by writing about it – this is how I have cared for my own spirit all throughout my adult life. I decided to create this blog to give myself a “sacred space” in which to do this, completely transparently. There is no getting around the vulnerability and exposure of my situation. I am choosing to try to embrace these things instead of fear them, so I am intentionally making this blog completely public and open to all. It almost feels like a calling.
Friends have lovingly swooped in to help make sure we get through this financially, through a “Go Fund Me” site to help cover my medical bills. I have also decided to sell downloads of my contemplative and other writings, re-promote my novel, and accept donations on my blog to try to take some pressure off Marshall, our sole breadwinner at home. I am trying to reframe all this as “learning not to be proud” and “learning to ask for the help I need,” and “letting go” and “blah blah blah,” but these things are utterly uncomfortable. Saying “I need” and actually feeling that need penetrate into my own void and inadequacy and stunning dependency are two wholly different things. So here goes.
I am certain of one thing at the outset: I need accompaniment on this unexpected journey. I cannot do this – whatever “this” winds up looking like – alone. I know in my heart I don’t have to. Stay close, and help me be both brave and trusting, honest and completely real as I set out on the path that has been laid before me.