Chapter 103: I’m not ok, and that’s ok (round two)
Last week, I wrote a long blog post filled with vulnerability. I posted this blog and spent a few hours panicking that it was too vulnerable to put out in the world. As I was re-reading this blog post, I found a typo and logged in to edit it. Somehow, my editing attempts led to a deletion of the entire post. Damn technology!
A few readers found and read this post before it was lost to the technological underworld and said they loved this vulnerable post. All my panicking for nothing! Argg, the irony! All my panicking that readers would react poorly to this post was for nothing. And then, when I truly felt ready to share this post with the world, the internet said “nope, not today.”
Well, it’s a new day and I’m making a second attempt to create a vulnerable, authentic post that I hope will make you smile, laugh, and think.
I have a LOT to say today. So much has been happening in my life that cancer has almost taken a back seat (almost…).
I’ll start with an introduction and some updates as I’ve heard from many new blog readers recently.
Introduction: Hello, you wonderful person! If you’ve stumbled across this random website, you’re either very lost, very bored at work, a friend of mine, a fellow chronic illness warrior, or a film producer very excited to find their next star! (Kidding, although wouldn’t that be neat?!)
I’m Courtney, 30-something internal medicine physician living, working, and trying to THRIVE with malignant brain cancer. My right frontal lobe has a hole in it where an anaplastic astrocytoma once tried to kill me. It still tries to kill me sometimes, but I won’t let it just yet. I have a lot more to do before I let that nasty thing take over. I work full-time as a physician, I write this blog, I published a book (selfish plug to read Difficult Gifts if you haven’t already), I’m working on book two, and I spend my free time raising awareness for three very important things: Brain cancer, patient advocacy, and invisible illness inclusivity.
I’m usually tired. Not like, let’s take a short nap tired. Like, TIRED. As in, so tired I could just sleep for weeks and still not be rested. But there’s really no time for that. Long ago, I decided I could either curl up in the fetal position, crying and sleeping and trying to ignore the fact that I was given a few years to live at age 29, or I could say, “Hell no, brain tumor! Not today. I have tons to do and I’m getting out of bed today and every single day my body lets me.”
Sometimes, my blogs have typos because when I write I’m not only tired, I’m also writing fast and in the moment. When a thought comes to me, I write it and post it immediately. I don’t plan blogs in advance. I don’t have a file of blogs ready to post. Writing is therapeutic for me. When I need to process something, I write about it. My hope is that someone else reading this might find hope or inspiration to process whatever they need to process as well.
PS. You can keep up with these random thoughts by subscribing to this blog or finding me on social media. I do my best to personally respond to every person who reaches out. No one should suffer alone. I think the meaning of life is to spread compassion. The literal meaning of compassion is to “suffer with.” I try to spread compassion through writing, through vulnerability, through honest stories of my life. I suffer, you suffer, we all suffer. But, when we suffer together, the feeling of suffering seems to dissipate. Instead of suffering, instead of curling up in bed, we get up and we face the day with the strength of everyone else we have compassion for.
Ok, that’s enough about me and my philosophy. Here are some updates:
As of August 9th, I have had “No evidence of disease” on my scans (brain cancer’s closest thing to remission) for one entire year. After a diagnosis of incurable cancer in February 2020 followed by surgeries, chemotherapy, and radiation therapy, this makes me feel exceptionally lucky and endlessly grateful. Not everyone with brain cancer gets this much time and none of it was promised to me. Each day is new gift and I’m so excited to keep opening them.
This week I will be working my last day as a primary care physician. I spent the past year working in a wonderful clinic in Saint Paul, MN. I went into primary care hoping to make a difference in the lives of people living with chronic illness since I can relate. I wanted to listen, to learn, to teach, to share, and to spread compassion so that patients feel empowered in their health.
I still want to do all these things, but I want to do them in a new capacity as a hospital medicine provider. In the hospital, I will work with people at their sickest. I have been there. I know what it feels like to be scared, vulnerable, and exposed in a horribly uncomfortable hospital bed eating the worst food (or no food at all) and speaking with a provider for far less time than you need. I know how scary this is and how much everything feels out of your control. I will be transitioning my practice to hospital medicine to help empower patients when they need it most. I’ve seen far too many people in clinic after a hospital discharge who feel confused, scared, and unsure how to advocate for themselves. I want to help bridge that gap.
I’m getting married! A few weeks from now, I get to marry my best friend. I’ve done this before and enjoyed it immensely. I was divorced and I have no shame in that. There’s no time for shame. I married my best friend at age 23 and we had a great 5ish year marriage. But, we got older, our personalities changed, and we divorced. So what! I wouldn’t have changed a damn thing. Now, we have new partners, better suited to our current personalities. My soon-to-be husband is such a tremendous person. I get to marry him in three weeks and I am the luckiest. My greatest hope is that the gift of new days keeps coming for a long, long time so that we can open and live them together.
Those are my updates. In short: Kicking cancer’s butt, new job, new marriage. Lucky, motivated, and in love.
When I wrote this blog the first time around, I talked about how frustrating it can be to talk about “mundane” things when you’re living with cancer. When I’m asked, “What are your wedding colors?” or “What type of flowers will you have on the tables?” I get irrationally frustrated. When my parents asked how we planned to chill the beer and didn’t agree with my plan, I sent such an angry text response I felt bad for days.
People mean well when they ask these things, but I’d rather be asked questions that matter. Questions like, “Why are you getting married? What do you love about your partner? Why did you decide to do this again?”
It’s easier to ask about the wedding centerpieces and call it a day. The problem is, I don’t really care about the wedding centerpieces. What I care about is the marriage. I care about the love I have for my partner and how to make that love last. I care about seeing my friends and family at our celebration and I care that they feel welcomed and loved. So, maybe they’ll notice that the colors don’t perfectly match, or that most flowers are fake (I hate the idea of killing flowers that will shrivel and brown a few hours later when I could buy gorgeous faux flowers and donate them to someone who can’t’ afford wedding centerpieces after the event). Maybe the beer won’t be perfectly chilled and maybe the food could have been integrated into the theme more elegantly. But, maybe, this doesn’t really matter at all.
Weddings aside, think how often we ask the easy questions instead of the real questions. There are so many moments when we walk past our coworkers and say, “Hey, how are you?” and expect, “Hi! I’m ok. How are you?” in response. This seems normal. But, when I started to really think about it recently, I felt annoyed. What if I’m not fine?
I’m happy to talk about wedding centerpieces, but I’d also like to talk about love. I’m happy to say “I’m ok” because it’s expected, but I’d rather be honest.
Today, I am not ok. I am better than ok. I am passionate and driven to make change. I am in love and I am filled with compassion. I am irritated and I am tired. I am stressed and I am scared. I am hopeful and I am happy. I am many things, but I am never just ok.
How are you?
Fondly,
Courtney
©CB2022
PS: I meant what I said about the wedding centerpieces. We have purchased (not rented) every item for our wedding (tablecloths, chair covers, candles, vases, plates, glasses, faux greenery/flowers, etc) and my hope is to donate all these decorations in bulk to someone who can’t afford décor for their dream wedding. If you know of anyone who might appreciate this donation, please send me an email.
PPS: As a hospital medicine provider, I will have much more time for writing and speaking events. If you’re in need of a speaker to discuss life, death or anything in between, I’m an open book and I love to share my thoughts with you. Is this narcissistic? Perhaps. But, hopefully it’s also helpful :)