When all other lights go out.

I wasn't going to write anything until after the new year, but I'm hopped up on steroids so I figure... now's as good a time as any. Please excuse my early morning ramblings and potential misspellings and grammatical errors and incorrect verb tenses.

I confess that for weeks now I have been kind of drifting in this doldrum state, not sure where to go or what to do or how to feel. I drafted posts for a while, but I've been deleting them because, to be honest, the general tone has been somewhat aggressive and I wasn't sure how well it would be received publicly. Last time, I was desperate, afraid of the unknown, unsure if I would make it. This time, I'm just pissed off.

But the outpouring of warm wishes and good vibes feels like when Galadriel gives Frodo the star of Earendil in the Fellowship of the Ring - Tolkien writes, "It will shine still brighter when night is about you. May it be a light to you in dark places, when all other lights go out." A light shone in the darkness of my soul when all other lights went out. I am deeply overwhelmed.

I especially am grateful to those who have offered food or gift cards, who have sent cards and gifts to either me or the children, who have been with me every step of the way. Kindness is contagious - I hope to repay you or pay it forward when I can.

Today I cut my hair, and my husband and children decided to cut their hair in solidarity. A friend of mine said, "That's very on brand for your family." Yes, it's true: we Millers are notorious for never splitting the party.

In total, we are donating about 72 inches of hair - 26 of that is from me alone. My son was the last to agree to cut his hair, as he was afraid to lose his special powers that his long hair gives him. I reminded him that all of his powers are within him regardless of hair length - and, at the very least, it will grow back. 

I am still getting used to my very, very short hair. Logically I know I look fine, but emotionally I am mourning a very dear friend who has been with me for these past 7 years. It sounds silly to say that about hair, but it's the truth. Perhaps I will share my appearance publicly at a later time when I am able to recognize myself in the mirror.

Tomorrow I will be in the hospital all day undergoing a CT scan and a full-body bone scan. Next week I begin chemo, and then I will be undergoing a brain MRI. Before, it was weeks of silence - now, I feel like I'm on the phone every day with doctors, hospitals, central scheduling. I get whiplash from it all, and it's hard to manage it all myself. At one point, there was an issue with the scheduling, and Godfrey was in the hospital on Christmas Eve trying to sort it out.

Anyway, back to the scans tomorrow - which explains why I'm taking steroids (they are pre-meds for the scans) and what inspired me to write this post. God, I am so long-winded, feel free to step away if you need a break. 

THE POINT IS / TLDR: I can't sleep when I'm on steroids, so I'm usually watching something like Raiders of the Lost Ark while binging on ramen and junk food and trying to make sense of my scattered, raging thoughts that are attacking my brain at a thousand miles a minute. Godfrey always wants to stay up with me to keep me company, but I have to gently and firmly remind him that he needs to sleep because caregivers need to care for themselves first and foremost. 

It's almost midnight, the kids are asleep, and I'm trying to figure out how to pass the time - when in walks my daughter, Freya. She takes my phone and downloads some Animal Crossing app, and says, "Let's play this together." She picks up her brand-new phone (a Christmas present) and downloads the same app. We play in tandem, comparing random characters, items, activities, goals. It's so silly, yet strangely bonding. I feel her body weighing into the couch, so I say that she can go back to bed.

She says: "You have stayed up with me during every one of those horrible sleep-deprived studies for my seizures, you were with me at every overnight hospital visit, you took care of me when I was sick more times than I can remember. Please, for once, let me do the same for you."

At around 2 am my son, Gareth, stumbles out of his bedroom and immediately thinks we were having a party without him (his worst fear). Freya explains what we are doing and her intentions to keep me company. Gareth replies, "Freya, you go to bed. I'll take the next shift." To me, he says, "Don't worry, I won't get tired. I've taken a few naps." He opens up his brand-new laptop (a Christmas present) and starts watching YouTube videos, quietly giggling to himself. 

As I tuck Freya into bed, she apologizes for not staying up longer - I find myself on repeat: she needs to sleep because caregivers need to care for themselves first and foremost.

Soon it will be 4:30 am, and I will be taking my next dose of steroids and then sending my son back to bed before I try to get some coveted sleep myself - highly unlikely, but it's worth a try. My fast will begin at 6:30 am, so I don't have much time to eat. And my heart is racing in my ears. Ah, what a dilemma. 

Before posting, I took a quick glance at the Facebook group membership and it is the literal definition of "running the gamut." Some of you are my relatives, some are related not by blood but by spirit and love. Some are old friends, long-lost friends, school friends, family friends. Some are colleagues whom I see every day, some are colleagues whom I've only met virtually. Some are complete strangers.

We are all connected in this very interesting virtual space for a sad and tragic purpose - but if there's one thing I've learned from living with stage 4 cancer these past 7 years, it's that there is strength in community. 

I feel that strength when I need it most, a light when all other lights have gone out, and I thank you all for giving it to me.