Waiting for my coffee on my way to work last Monday, I realized I was going to vomit. I spent a few moments in denial before hurrying outside with my cheeks puffed out and three fingers sealing my lips shut. A New York City street trashcan seemed the least antisocial option, and I heaved into it several times – a pale, bubbly vomit of unknown cause.
I don’t vomit very often (even when I’m ill), so I felt instantly on high alert. I hopped in a cab and went home to Brooklyn, where I stayed lying down for a few days with headaches and nausea.
I told my oncologist and he scheduled me for an MRI. It seemed like overkill – surely this was just a virus or something? Matt told me that the girls at our local coffee shop were also suffering from headaches and nausea, and we both took some comfort in that.
But I didn’t improve much as the days went by, and so on Saturday we went over to the Memorial Sloan Kettering Urgent Care Center where they scheduled me for a brain scan that afternoon. The results arrived the next day – a lesion in my brain, just behind my right temple. It was – it is – overwhelming news.
A lot more tests followed. I had my first MRI, trying to breath calmly through the hammering and yelping of the machine. I was oddly grateful for the little scuff marks on the inside of the white tube, something on which to focus my eyes in the claustrophobic closeness.
The MRI found another nine tumors floating in my brain. I know now that brain metastases are more self-contained than brain tumors – they don’t tend to eat into brain tissue. I envision 9 blueberries and one grape floating in the jello mold of my mind.
They put me on steroids to control the swelling in my brain, and gave me anti-seizure drugs just in case. They picked stereotactic radiosurgery as the first line of treatment – radiation beams targeted directly at each of the tumors. This kind of therapy minimizes collateral damage to the brain. They made me a helmet and face mask to keep my head perfectly still during treatments, while white and silver panels floated noiselessly around my head (it made me feel like I was in a scene from Space Odyssey).
They expedited the radiation therapy and I finished my last treatment on Thursday. I’ll have another MRI in two months to see if the tumors have responded, and make sure there are no new ones.
It’s been an overwhelming couple of weeks. We had relaxed temporarily about 2019 – we knew that there were risks, of course, but we’d had a set of good scans and we were ready to go skiing and have fun and make life plans. Now, I am a patient again: waiting quietly in beige waiting rooms, lying still on scan tables, sleeping through most of the day. I take my drugs on schedule and have to be careful on my own in case I lose strength or have a seizure. I feel, again, like life has been paused.
We know, after last year, how most of this will work (sort of). We know we can handle a lot. But it is hard not to feel resentful at the moment. This isn’t what I wanted! I’ve been good! I’ve been patient! I’ve been doing everything you told me to do and more! I’ve been resilient and positive and good. Now I want my reward: To go out again into the world and be silly and feckless and ordinary and well!
My disease is fascinating and mysterious: brain metastases from bladder cancer are exceedingly rare. But treatment and diagnosis and monitoring are tedious. Turn up here. Wait there. Get filled with drugs. Hope for good results. I don’t want to be a patient again. I don’t want to be unwell. I want to care for myself and feel like myself.
The MRI and radiation therapy technicians tell me “excellent job!” when I’ve lain through my whole scan without squiriming. It seems like such a simple thing: to lie still. But as they feed me into the noisy white tube, I feel my legs and mind buzzing: run! Of course, there’s nowhere to run to. But it feels like maybe if I just made a break for it, then maybe I’d find freedom from all of this.
11 Replies to “Blueberries in my brain”
Very sorry to hear about this development – it must be very scary and just awful
Dearest Nat, feeling saddened by this news but in admiration of your brave expression,insight and objectivity at this awful time.
It has been said “positive anything is better than negative nothing”.
I hope you are feeling the oceans of love around you, that is being offered by your family and friends.
There is no better sense of comfort.
Love K x
Thank you, Kerry – it is quite overwhelming, but the oceans of love are indeed deep (and the realest thing in the world). Big hugs x
You are an amazingly strong young lady. You inspire a lot of people, including me.
Stay strong in the knowledge that a lot of people are thinking of you and Matt.
Hi Nat. You are an inspiration to all, including me. Stay strong and always remember a lot of people are thinking of you and Matt.
Could’ve cried waiting for my flight reading this. Sending love, strength and hope to you darling Nat. Your determination is inspiring to all.
I swore a lot while reading this Nat. You deserve a much better chapter than this. I’m back in NYC at the end of Feb. Please let me know how I can support you and Matt . Z xx
Through all of this, I admire your strength, the rawness of your words, and your beautiful prose. We love you.
Thank you Andrea, appreciate it so much and love you guys too x
Although so far away, sending all our love to you and Matt. Your ability to express your thoughts and feeling makes us feel so much closer. Love you Beautiful Lady xxx
Thanks for your beautiful words, Aunty Anne. Sending you all much love and hopefully we will see you soon!