My hair is finally growing back. After the radiation in January, my hair would come in, then I’d feel this burning on my scalp and it would all wipe away. Logan said it looked like Gru with his nose up-
Some special days I’d cover it but I usually stayed unbothered and let it air out because it just hurt…..either way- wigs were annoying and silk scarves became a nuisance.
But NOW the length of my baby curl on my shaved side is about 2 inches. It winds up behind my ear and into whichever trucker cap I’m wearing that day.
The last month has been a process of unraveling. The shock is wearing off and I’ve had a few of days where I’m pulled into a parking lot to let the tears flow. This curl grounds me.
A lot of my free time is spent thinking that it’s okay if I die and finding peace with whatever the world tosses my way.
Then, in the least exciting fashion - I continue to wake up.
What do you do with time? In my world it has always meant having goals and making progress. But, how can I grow if my body is giving up on me? Is this some spiritual quest? Am I learning my final lessons?
In an effort to remain sane, stable, and a good mom- I even interviewed for a different psychologist role within my district. I don’t think I truly wanted a change, but I definitely enjoyed the feeling of having opportunity and an interview to distract me from the messy medical stuff. New, tiny goals revolve around planning as though I’ll be fine and also picking out burial plots.
It’s a mind fuck to say the least.
Back to my point. In the middle of this unknown personal growth, I’m back in New York for my doctor appointment and had a full day of medical hiccups (not reliving that right now).
This meant hours alone in my thoughts waiting for scans, ect. There was a gorgeous view of the murky Hudson from the lounge- and the perfect setting to catch a glimpse of that baby curl peaking out around my ear. In that reflection, I decided to write this update.
Maybe it’s dramatic, but this one curl seems to measure time now. As the other patches of hair kept growing and falling out, this one remained. It had been shaved in October during the surgery and in December by the artist who shaved the designs on that side of my head.
Yet now, this relentless curl signifies how long it’s been since my skull was butchered to relieve my pain. It’s how long my world has felt surreal and the exact amount of time it’s taken for me to slip out of the functioning numbness.
More simply- the shock has ended-
If I didn’t have kids, I’d be content with some chateau in France where I could end things with honor. A lethal IV and a dignified good bye feels more humane than the current medical state. How lovely would it be to be someone’s golden retriever? Guided to their final rest while their closest people whisper sweet words.
In my opinion, that is the purest act of love. Most importantly, the least selfish.
Ultimately, my journey is different- I have people worth fighting for and France is not an option- yet.
While I continue to stretch my hope- I have to acknowledge that I DO NOT read for fun. I read for work, curiosity, need, and to help others. If every written work could be on Netflix, I’d gladly binge……Scratch that. -Just imagining the poorly summarized research articles and drawn out studies as episodes makes my skin crawl. Yet I’m required to read and continue to search for my treatment options. Just picture me drowning in stack papers- it’s legit.
The time that this curl has grown is the exact amount needed for me to hear I didn’t - then I did have cancer and I was and then was not in remission.
Have you ever looked up the word remission? It is literally the most bullshit word anyone could use- it means nothing.
From an improvement in symptoms to no visible signs of malignant disease.
Yes, you may think - that’s still an improvement- but if you feel the same or the symptoms persist how do you process the positive in a genuine response? When you pick it apart- that word covers so much and has the least impact.
Still- I was the fool who was excited to hear it as though the meaning held truth and in the world of cancer- some goal had been reached.
That same week, they (all of the specialists) agreed that my LCH was systematic and had “infiltrated” my pituitary as well as formed a spot on my liver. That word remission was used presumably on their end that the liver spot was benign and my “cushingoid” presentation was due to the steroids.
Moving forward- my palliative care NP is wonderful in helping me plan for a future where some of this pain that may never stop-
I’m just out here wrapping up my 3rd and 4th chemo treatments with the hope that I can work on getting stronger (eventually). Enjoying my blonde curl and pretending I’m okay when someone asks the flippant question “how are you doing?”
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