Softly Unhinged
Cancer screenings, working mom life lately, and it's almost spring? 🌸
In the time span of the past few weeks, I found myself wondering if I was going to lose my job ( fortunately, that did not happen, I am tempted to add yet, but without going into a political rant at the present moment -things are very uncertain and scary for people right now in my sector- Nonprofit- also adding we have to give very detailed reports on where every penny goes that we receive and include a whole book proposal of detailed research on the need/impact for our services, the impact of the previous year with numbers and data, and very detailed meticulous budget outlining every penny and where it is going 🥲 I’ll digress ) and then once I got on the other side of that found myself terrified I might have cancer again. Spoiler/ good news- I do not!!
(The below is not medical advice, only my personal lived experience)
Skip to the very bottom for a good list ☀️
Let me explain. In circa 2015, I was diagnosed with stage 2 papillary thyroid cancer, diagnosed with symptoms, through labs, and a biopsy. A large enough tumor that warranted a Total Thyroidectomy- total thyroid removal surgery.
I hope you have been fortunate enough not to need to know where/ what/ the Thyroid is and does, but a brief summary is that it is “The thyroid gland is a small, butterfly-shaped endocrine gland located in the front of the neck, below the Adam's apple. It produces two essential hormones, thyroxine (T4) and triiodothyronine (T3), which regulate metabolism, growth, development, and other bodily functions”, - so AI says. A few fun symptoms below that one might experience with Thyroid disease (ironically you can have this even after you no longer have a thyroid);
Common symptoms are fatigue, cold intolerance, weight gain, constipation, hair loss, "brain fog," skin dryness, nail changes, and menstrual cycle changes (typically irregular cycling). Don’t forget joint pain, headaches, thinning hair, depression, and digestion issues, honestly, the list goes on and on, but I digress. It does alot of very important things, things you take for granted until it is no longer functioning the way it needs to be.
After enduring surgery, a gnarly looking scar, walking around with damaged vocal cords for 8+ weeks and learning a parathyroid was accidentally removed ( affects your calcium production- spoiler there are 4, and you need all 4) I became dependent on a thyroid hormone replacement medication essentially for life, called levothyroxine or Synthroid.
If I estimated a monthly prescription every month for 10 years 10x12= 120 prescription bottles for a replacement hormone to do what my body is meant to do. I should add I have yet to reach optimum thyroid levels 10 years into “treatment”, and every prescription change sets the clock back another 90 days to take effect or see a change.
Why am I writing about this? Because this is one tiny aspect of Spoonie's life that is often not talked about. It’s a bummer. I was explaining to a loved one recently that it really bums me out, so why bum anyone else out, too? Which leads to me thinking about a video that went viral on international womens day- “what women carry” another essay for another time.
I wonder if I am going to relive the nightmare—every annual cancer screening/ check-up, all the quarterly lab work.
“Spoonie” is a new term I learned recently, a term used by people with chronic illness to describe how they have to ration their energy or have limited energy to daily tasks, different tasks use different amounts of spoons, but you cannot get more, you have a set amount each day. To my most recent understanding, anyone who lives with chronic pain, a mental health condition, or a disability may identify as a spoonie.Long-term health conditions that have overlapping symptoms of unrelenting fatigue, limited energy, and chronic pain.
The “spoon theory” idea and term came from Christine Miserandino, a person with chronic illness, Lupusm, to describe to a friend what is it like. www.butyoudontlooksick.com https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
But back to 120 prescription bottles. To my left on my nightstand sits an overflowing bag of prescription bottles, maybe 12-20. I have been meaning to discard them for some time. They are not all thyroid prescription medications, there are 3 different ones that are current prescription medications I take on a daily basis. Between these nearly 2 dozen bottles, there are actually 6 different prescriptions, of the three I take regularly currently, there are others that have been prescribed in the ER that are for emergency use, as in the level of pain has gotten so bad I can no longer speak, function, or move and am considering going back to the E.R, they are a fallback.
Why haven’t I gotten rid of them? I got it into my head recently I would like to do something creative with all these bottles. I wish I had 120 just for the one prescription to represent living with thyroid disease and chronic illness the past decade, as a woman, as a mother, as a creative. Chronic illness and thyroid disease is often referred to as the “invisible illness” though it drastically alters your day-to-day abilities and quality of life, and you often don't look “sick enough” to have support or understanding from the outside world.
Honestly, I've struggled to even call myself a “cancer survivor” because I was told I had the “good cancer” While it is a less aggressive form of Cancer with a generally better prognosis than other forms, nothing that permanently alters your ability to exist / or changes your health long-term for the worst can be considered “good”. These prescription bottles are one of the few visible markers I have of what I have lived through.
My youngest son was only 6 months old when I got the diagnosis, it was honestly the tip of the iceberg in my chronic illness journey. He is now 10, my youngest is 7. I have been raising two children, gone back to school and got an undergrad degree, built a new career, have a marriage of 12 years, and wonder if I will ever be able to afford a home with medical debt, student loans, and a nonprofit salary and inflation- all this not too toot my own horn but say a lot of life has been lived even while it has often felt like life has been draining from me. It feels like I have been limping along in an Olympic marathon, with no breaks, no support, and no respite.
How do I reconcile the overachiever I have been my whole life with high-functioning anxiety while living in an underachieving body? This has been the battle of a decade.
Maybe that is why I am embracing being “unhinged” in my 30’s.
Being raised in a very morally strict/ evangelical/ purity culture etc. the “good girl” syndrome was deeply ingrained as was the fear of ever doing anything vaguely “wrong” or being an “inconvenience” to others.
I have no life-altering insights at the present moment, only I am looking for missing pieces of the puzzle. I recently picked up a book that’s been on my TBR list for awhile from my local library called “ On our best behavior, the seven deadly sins and the price women pay too be good” by Elise Loehnen. I have gotten thorough the author’s notes, intro, and almost all of chapter one and it has been for lack of better words very eye-opening.
All this to say, my last substack was sent in January, the world is full of both terrible and beautiful things and like many others I am walking that fine line between traying to stay informed and active and also not lose my sanity. I wish I had the answers or solutions to being a human/woman/mother with hypervigilance and a vastly underachieving body/ chronic illness. I think like most of you I am also trying my best. To budget the groceries, ask my kids and spouse about their day at dinner, smile and make eye contact with the local barista/cashier/ librarian/teacher, text the friend who just had a baby, send a voice note to a fellow working mom, take my daily walk, try to stay hydrated, not forget to take the three prescriptions and countless vitamins, try to keep showing up loving/creating/ hoping- “ human-ing” continue to see the good when it feels like everything is on fire. Sometimes I hesitate to add any of my thoughts, story to an already noisy world, but if you are trying and everything feels like alot right now- I hope you know it’s not just you. We are all trying, struggling.
Words have been so few. Already this word doc is pages longer than I mean it to be. Maybe the words are mainly for me, but I hope a few of them feel like they are for you too.
A brief list of some Good things- or a “Goodlist” as Erin Loechner would call it.
- the sun is setting past 7pm again! My fellow S.A.D.D. folks get it :)
- PTO/ spring break
- hopefully a chilly road trip to the beach
-one year taking a weekly yoga class as working mom/adult and honestly wish I had done this sooner- that one hour, one day a week, it is saving my life right now!
- less importantly, weekly episodes of severance and white lotus
- this substack from
-this substack from on “Practicing connection in a sideways world”
- picnics and eating outside are a thing again :)
-a moment for tulips and the joy they bring :)
- if you have to put in a PTO day for a dr. apt you really dont’ want too and drive 6 hours round trip you might as well make an artist date/ trader joes put stop out of it right?
-if anyone has any helpful books/podcasts/ or hacks for ADHD ( long story) please send them way ❤️
As I am sending this I see spring solstice is right around the corner and I hope this changing season brings some hope for us all collectively but especially you in your own corner of the world ☀️