Struggle and Surrender
on still learning to trust
I’ve been struggling the past few days with major congestion. Coughing so hard you feel like you’re going to throw up kind of congestion. Weak. Headache for the first time in months. Fever…maybe? Had a routine echocardiogram on Friday and of four different thermometers used, two showed a fever and two did not. Every time I have a fever, I’m “supposed” to go to the emergency room. This typically ends up being a 3-4 day ordeal as they take bloodwork, run all the tests for various infections, and I stay hospitalized awaiting the results. What my body needed more than anything after that Friday appointment was to rest in my own bed. So my breathtakingly beautiful mom drove me home and I did just that. Rested.
Kyle and the girls were out of town. It was a grace to have a quiet house in the state that I was in, but also brought up feelings of isolation of course. “Do I need to be alone or do I need connection?” plays on repeat regularly in my mind. Having historically been a hardcore extrovert, I find myself leaning more and more instead toward needing time alone. This need for my own space kicked into high gear following the birth of our third child in less than three years, which happened at the end of 2021. Now almost three years since then, and the new dynamic of my need to not be as attached to things, ideas, and relationships in the ways I used to be is still a major adjustment. I believe in seeking peace through detachment, while recognizing that if the hope is to break through the illusion of separateness and instead see the reality of our oneness, this must entail a balance of independence and interdependence.
Anyway. This whole humaning thing. What a wild journey, am I right?
I can’t legally drive again until March, after having had a seizure seemingly out of nowhere in the grocery store last month while on a date with Anna, my oldest child. Of course it wasn’t actually “out of nowhere,” seeing as how the cancer that originated in my left breast has not only metastasized to my liver and my bones, but also to my nervous system. We’ve known this since late last August, when the results from my spinal tap came back cancerous. So the seizure was a neurological response to the cancer and in that way “made sense,” but didn’t make sense at all in that I had never had one before and had been feeling absolutely fantastic directly beforehand. Not just feeling fantastic that day, but really for the previous four weeks. The debilitating migraines that had visited me during August had left, as had the double vision issues I had been dealing with day in and day out over the summer. I had even started to run again for the first time in almost a year without experiencing awful pain in my lower back. This clip is from four days prior to the seizure when I was first realizing it didn’t hurt to run. The following day, I laced up my running shoes and went for a trail run at the park I grew up going to.
Things were not only stable, but better.
And then boom.
A grand mal seizure.
That my five-year-old had to witness.
On the grocery store floor.
Kyle and I make a huge point to prioritize one-on-one time with the kids. We find doing so critical to our ability to really connect with them and see their magnificence, which is a true challenge to do when we’re with all three of them (ages 5, 4, and 2) at once and swept up in the utter chaos that regularly ensues, clouding our ability to see. So hours before the seizure, Anna and I had hopped in the van, stopped by our favorite local coffee shop, and hiked Humpback Rock. I brought my DSLR, she brought her curious spirit, and we had the best time. After that we went through the car wash. The last stop was the grocery store.
We were rounding the corner from the yogurt aisle into the bakery about to head to checkout when I suddenly felt extremely dizzy. I held onto the cart and told her I wasn’t going to be able to talk for a moment, and the next thing I knew, thirty minutes had apparently passed during which I had had a seizure and lost consciousness.
When an employee from the bakery who saw me convulsing rushed over, Anna told them my name was V and that her daddy’s name was Kyle. She located my phone and Kyle was called right away along with 911. Upon arriving to the hospital, I was feeling fine. Later, I noticed a bump on my head from where I had fallen. They ran all the scans that are protocol to run when someone has a seizure, and everything came back clear so I was able to go home that night. I have thought many times since then about the fact that it could have been so much worse if the seizure had happened while I was behind the wheel, which would have been the case had it taken place just thirty minutes earlier or ten minutes later. It’s one thing for me to have stage IV cancer and for my loved ones to be bracing themselves for my death by way of this disease, but to contemplate dying instead in a car accident with one of our children…
I’ve given a lot of thought over the years to the idea of comparative suffering. How it is our tendency as humans to engage in this idea that we either have it way worse than anyone else could possibly understand, or that we shouldn’t complain about our suffering because someone else’s pain is deeper. At large, I find engaging in comparison to generally be very unhelpful, as it is simply true that being a human in this world is a traumatic experience. That being said…I cannot fathom a deeper pain than that of losing a young child. People say “I can’t imagine” but I do imagine, regularly in fact, what it would be like to have a child die. At appointments during which I feel anxiety rising up in my body, I will often use the power of imagination to pretend that it could be one of my girls having to go through this but that I have the opportunity to go through it on their behalf instead. This mitigates the anxiety every time, as imagining any of them having to swim through this ocean of medical treatments, with no end ever in sight until the waves are consuming, is unbearable.
Seizure medication that I now take morning and night was immediately prescribed after the incident last month, and the chances of me ever having another episode are very low, though I admit I don’t put much stock in statistics, because the reality I find myself in is essentially a statistical impossibility. The reality, that is, of being diagnosed with stage IV cancer with:
-No previous lesser stage cancer (very uncommon)
-No family history of breast cancer of any kind, much less lobular carcinoma (what I have) as opposed to ductal (ductal being the much more common type of breast cancer)
-Being in my mid-thirties and having been active and health conscious my entire life
-and most statistically unlikely of all, learning the cancer is already so severe that it has spread to my nervous system.
The average lifespan once leptomeningeal disease is diagnosed (the name for when cancer has metastasized into the spinal fluid) is 2-4 months when treated. Weeks if not treated. But here we are. Here I am. Usually existing with what feels like a massive invisible disability, while scheduling my life around chemo infusions and MRIs. Then experiencing symptoms or side effects with no warning that serve as sobering reminders of how severe the situation still is, despite handling the treatment “so well so far” as my doctors have recently stated.
On Friday night, after resting throughout the day after Mom dropped me off at the house when the echocardiogram was over (the only part of which was enjoyable being a conversation I had with the woman administering the echo about why I no longer believe in hell and haven’t for a long time - but more to come about that on a later post) she came back over that evening and heated up vegetable soup for me that she had made for us earlier in the week, put ice packs on my throbbing head, and massaged my neck per my request as I lay there in bed wondering when or if I am going to turn a corner.
Ever since the shocking and entirely disorienting terminal diagnosis of last summer, whenever I experience ailments like this, it’s easy for my mind to consider that this might be the beginning of the end. I think what I have is a relatively minor virus of sorts that I’m just responding to more severely than I otherwise would were it not for the compromised immune system I now have from the cancer. But I find it difficult - when feeling unwell - to not contemplate whether or not I’ll ever feel good again.
Yesterday, whilst coughing incessantly, I found myself wondering what trust would look like, sitting from where I sat, knowing what I know. Then I received this photo of my middle child from a church member who took her to a festival while Kyle met with the bishop after leading worship at the Episcopal parish he is the priest of.
Instant tears from her beauty. My butterfly girl. And amidst all the many things I don’t and will never have answers for, I did find within myself an answer as to what trust looks like.
Here I Am October 6, 2024 Trust looks like continuing, always and ever continuing, to surrender to the metamorphosis. Knowing some days your exhaustion is from the process of dissolving into goop and the growing pains of developing wings And other days it’s because you’ve grown your wings and have simply been flying so damn much and need a break. Okay. Okay. Here I am.
