Laurie on the Loose: a manifesto with many caveats and a preemptive mea culpa
When is a good time to start your first public blog about your journey with breast cancer? Well, it’s 4am and I woke up half an hour ago with a mean headache and superhuman energy as I have yet to come down from an adrenaline high of industrial strength Benadryl, 100mg Dexamethasone and the two emergency Epinephrine shots it took to pull me out of anaphylactic shock from my very first chemo treatment. So right now seems the perfect time. And really, what could go possibly go wrong?
This is in no way a scary warning for anyone starting chemo, as I am an incredible overachiever. Not to brag, but I’m new to cancer and have confirmed that I’m already beyond the 99th percentile in achieving the most rare side effects. I just never fail to amaze those around me… including the 15+ people who had to witness my “hypersensitivity reaction” (note the understatement in that medical terminology).
CAVEAT #1: NOTHING I write here has any medical validity whatsoever and I don’t claim accuracy either. I am learning this in the way a 5th grader would make a poster about cancer for the science fair. And of course, none of us would seek medical advice from elementary school kids (maybe middle school though… at least they get real grades and I’m learning that math gets real hard then). My only advice to offer is if and when you have questions or a lump or a worry, see a doctor ASAP. Don’t put it off. I am so lucky that I didn’t. And get a mammogram before age 50; ask for it and fight for it if necessary. Beyond this, I have no advice to offer.
Why then am I writing this? I’m starting to realize I need a full Public Relations team to make sure I am adequately sharing with everyone who is asking what is going on with me and those who further want to share my story with others. Of course my husband Mark & my family would gladly take on the comms project to help… but my inner control freak says I must own my narrative. And truly, that is important given the loss of control & isolation cancer brings. But I am cognizant that with ownership comes commitment & adulting. So my friends, it may be worth noting that I still haven’t emailed my family, friends or colleagues a synopsis or any real updates. At best, I’ve sent ad hoc texts and calls. Execution isn’t my strong point, but being a visionary and ideating isn’t getting me anywhere either. So I’m using this blog to muster up some follow through and bring everyone up to speed via this site.
Hence, I offer you the remedial 5th grade synopsis:
- I have stage 2 breast cancer with a triple negative test result, which means it hasn’t spread yet, but it’s a mean, aggressive cancer. It’s a lump about the size of a meatball — not the American kind, but like an IKEA-sized meatball, just under 3cm (Yup, that’s a metric conversion test for the Americans!). And I really do miss IKEA meatballs; regardless of the horse meat fiasco, they are the mac n cheese comfort food of Sweden.
- Originally, the lump just seemed like a mastitis infection, but it didn’t respond to antibiotics and then the following appointments for mammograms, biopsies and with the many oncology specialists led to a downward spiral of bad news… conveniently happening in the middle of the holidays. My Christmas cancer came with no tidings of comfort and joy; the news just got worse.
- This week, I started a 12 month regimen of immunotherapy, along with 2 stages of chemo — Part one is weekly for 12 weeks with a chemo cocktail (specifics TBD given my violent response to one of the drugs). Part two is the classic chemo cocktail dating back to the 70’s … this is the one most people talk about. It makes you pee red dye. Like an old school Manhattan or Negroni, it kicks your butt way quicker than a Cosmo or Aperol spritz. I will have 4 sessions of that cocktail— every 3 weeks. So in total, there’s 6 months of chemo treatments — not accounting for delays.
- After this we will lumpectomy whatever is left — hopefully not much. Because it’s a really mean cancer, I can’t go straight to surgery. They need to first disarm the cancer so a bit doesn’t break off during surgery & do mean things somewhere else in my body.
- Lastly, I’ll have radiation to zap anything that might be left. Following radiation, if anything is left then I will go back to chemo. Like a bad game of Chutes and Ladders, there’s no strategy to fully avoid this, just the extensive probability stats underlying my treatment plan. Roll the dice and the odds are in my favor.
- Good news is that I literally have Vegas odds that we can kill this all with the 12 month treatment plan & I will get my life back. As of now, my system has no idea this nasty meatball is in my body. All my blood work (shockingly) shows up as if I am a perfectly normal & very healthy middle-aged woman. This is further indication that the cancer is only in my breast lump.
CAVEAT #2: I am NOT seeking medical advice or referrals here. I have an incredible oncology team and endless support systems. I am further blessed with a robust personal network — I’m reaping all the benefits of being in a great medical hub and coming from a medical family. And in case you are wondering …yes, I was supposed to be pre-med. But at 19, I decided to mix it up & chose Anthropology as a major — My first case study in cognitive dissonance.
Drawing on these anthropological sensibilities, note that when I discuss medical practitioners, I am not representing their professional advice, just relaying my limited understanding. When necessary, I will use pseudonyms to protect these amazingly competent people from my elementary interpretation of cancer treatment.
What the heck will I write about? I will share the funny parts, the scary parts, and what I am learning as I go through this cancer journey. Anyone who knows me would say I am snarky at best, and condescending & overly opinionated at worst. I’m not a Facebook, Instagram or Twitter person, but I do like to write. And this gives me one place to put it all down. There are many reasons I am not on social media, but mean intent or disrespect for others is not among them.
I will try my very best to represent everything in an authentic way whilst being respectful. No one should feel bad about themselves in anything I write. Shocked, speechless, appalled… maybe. Occasionally taken aback and often laughing out loud is my goal, but I absolutely never intend for anyone to feel bad about themselves, their choices, or their situation.
Indeed, this blog is a vulnerable adventure that’s best named “Laurie on the Loose,” but rest assured I am seeking wisdom from all the preeminent philosophers of our time, including the Indigo Girls, Rush, Brene Brown, that Jay guy in LA with the glowing eyes, and the Calm app (free version of course). Thoughtful inspiration continues to find me everywhere I turn.
In fact, inspiration was right there when I woke up to the TV at 3:30 am. In South Park’s Breast Cancer Special Ever (s.12 ep. 9) Wendy receives sage advice from the school principal for her breast cancer awareness crusade:
“Cancer is a mean little lump that must be destroyed. Cancer doesn’t play by the rules, so neither can you. …you fight it because it doesn’t matter if you beat it or not. You refuse to let that fat little lump make you feel powerless.”
And with that advice, Wendy goes to the playground, beats Cartman to a bloody pulp, and regains power. Thus, I shall now call my IKEA meatball “Cartman, the Christmas Cancer.” South Park fans will understand when I say that both Mr. Hankey and Mr. Hat would be quite proud of me.
CAVEAT #3: Do not feel obliged to read this if the humor isn’t for you, the thoughts are inane, or you find it inappropriately irreverent. Think twice before sharing with kids, super earnest friends, or professional associates who might question your judgement or taste; I really don’t want to ruin your reputation. I will personally share this with a broad group of people and you are most welcome to share further with whomever you like. It is very much a public site. Leave comments and suggestions on how to make it more interesting. (I am sure shorter posts is on your list already.)
This blog is in no way a reflection of my professional life nor my employer (I guarantee I am at present in no condition to represent “the Company” here or elsewhere). Nor is this about me as a mother (If I choose to share posts with my daughter, it will be us reading together). This blog is just about me as a newly minted cancer survivor trying to live through an especially cold and lonely winter in Michigan.
Future posts will not be nearly this long and I might even run out of things to say. Please do send questions or things you’d like to know in future posts. I will try to post at least weekly and include more pictures.
Welcome to my crazy. With deepest gratitude, Laurie
