In which I discuss movies, books, and other things that make me more than my diagnosis.
December 19, 2020
complaining
November 18, 2020
fself care
October 13, 2020
not so awesome news
Short update-I got some news today to update, I am still processing this information I've mentioned before that I am in a wheelchair/walker but,I am no longer able to use the walker. the paralysis has progressed to the point that I have a1most no sensation left in my left arm or my left han dor my left leg. This makes it unreasonable. to propel myself in a wheelchair let alone hold myself up in a walker when I have no feeling. no strength no sensation in my left arm So I need an electric wheelchair for my one functional hand. I met with my Rockstar Neurosurgeon. My tumor is essentially inoperable if he goes in after it I will NOT wake up. I don't need second opinions from Drs Google and remember it is not my responsibility to comfort you if you feel sad that this thing is growing in my skull.
I asked the Rockstar NueuroSurgeon if it appeared possible 1 would walk again?
With the location and size of my tumor it is inoperable and any deficits from which I suffer are likely permanent
September 27, 2020
hair update
September 14, 2020
wheels and a walker
August 18, 2020
Speak it into reality
Life is too short to forget about goals and the future, right? In these days of the coronapocalypse, it is a little difficult to plan for the future. Do I want to spend a week in the mountains locked away in a cabin in September?
Yes.
Do I want to take an Alaskan cruise in January?
Yes.
Do I want to go back to Italy next March?
Of course I do.
But the thing is, the coronapocalypse has ruined any way to plan for the future. When will this pandemic end?
So I can't really make plans for after the pandemic, because when will that be?
But I noticed on the Twitterverse that there were some people who were speaking their future into reality. For example, someone (I don't remember who) tweeted that in 3 months they would run a 5k (or something). And then they made it happen!
So, speaking the future into reality. By the end of 2020, I will complete my second 5k. (My first one was pre-cancer, and I ran/jogged the entire thing stopping to walk, in a respectable 32-ish minutes.)
Now, considering the cane, the cancer, and the likely continuing pandemic, I have no delusions of running a 5k in that kind of time; however, even if I have to walk or crawl or use crutches, I will complete a 5k by the end of the year.
And speaking more of the future into reality: is that by the end of the year I will get my writing published. Well, guess what.
I got a second piece published: Schrodinger's Cancer Patient.
I am extremely proud of this piece. And! I am that much closer to meeting my goals!
August 8, 2020
Published! "Mother's Love"
August 2, 2020
Tough week
July 27, 2020
Sometimes It IS the little things
July 23, 2020
Original Creative Piece: Sometimes
July 16, 2020
Cancer update!
July 11, 2020
Spoon Theory and being an Introvert
July 6, 2020
Read with Me: The Cast by Amy Blumenfeld (Lacuna Loft Book Club)
Twenty-five years ago, a group of ninth graders produced a Saturday Night Live–style videotape to cheer up their ailing friend. The show’s running time was only ninety minutes, but it had a lasting impact: Becca laughed her way through recovery, and the group―Jordana, Seth, Holly, and Lex―became her supporting cast for life.
On the silver anniversary of Becca Night Live, the friends reunite over the Fourth of July to celebrate Becca’s good health―but nothing goes as planned. The happy holiday card facades everyone’s been hiding behind quickly crumble and give way to an unforgettable three days filled with complex moral dilemmas and life-altering choices. Through humor, drama, and the alternating perspectives of five characters, The Cast explores the power of forgiveness, the importance of authenticity, and the immeasurable value of deep, enduring friendships to buoy us when life plays out differently than expected.
June 27, 2020
One Year cancerversary
Well,
one year ago today, I was diagnosed with brain cancer. I'm still here,
still mostly me, minus a few bones and plus a few extra scars. When it
comes down to it, I don't want to celebrate this as some special
milestone; I just want to say that inertia keeps me going, and as long
as I can keep on going, I will keep on going.
As a young kid, I remember taking a special test, and in the 3rd grade I was moved to the Gifted class. I was proud of being a smart kid. I loved to read (still do) but for me, for most of my life, my proudest asset was my intelligence, my logic, my rationality. Life played a dirty trick on me by letting this happen, and it just wasn't fair. I felt betrayed, lost.
I was afraid.
But
it wasn't just the cancer, I was afraid of losing myself. I begged my
Rockstar Neurosurgeon not to make me stupid. I was so scared to wake up
from actual literal brain surgery having forgotten how to read, how to
spell, how to write.
Would
I even know if that part of me was erased? Who would I be without that
part of me? My Rockstar Neurosurgeon is a true Rockstar, and I came out
of that first (of multiple) brain surgeries with very little in the way of
deficits. My reading speed slowed down, but otherwise I was okay.
Since
then I've had radiation beamed directly into my head, three different
kinds of chemo, three brain surgeries, countless MRIs, finding more
tumors, and the never-ending isolation of Covid quarantine. But
after a year of all of this, I am doing okay. As okay as I can be with
cancer.
Yeah, I have cancer, but I'm not helpless, and I'm not dying
yet. I spent a lot of time thinking about my inevitable mortality,
staring at that bus. It took me a long time, but I am finally able
to stop thinking about it, at least for days or even weeks at a time.
It's not about dying of cancer any more. For now, I choose to mark this
milestone by living with cancer. No cakes or parties because I don't
want your germs, but I won't say no to a few more penpals, and if you
would like to donate I still have that Gofundme, Amazon wish list, Cashapp, stuff
like that. Do you know how much it costs to keep up with prescription copays?It's a LOT
My family and friends who have been here for me, thank you for all of your love and support. It means more to us than you could possibly know.
Ok, ready to hear the original poem of the day?
Things they don’t tell you about cancer:
It is lonely
It is frightening
Everything hurts
The chemo isn’t even the worst part
Well, sometimes, it is
There is so much to keep track of
Like a full-time job
Flu season is scary
Covid quarantine is pants-shittingly terrifying
You can’t hug every friend or family member you see
No matter how much a good strong embrace would help
It is too dangerous
Besides
Your skin will hurt
Your stomach will hurt
Even hugging your dog will hurt
there is so much fear
Is this a normal cancer symptom?
When should I worry?
When should I just take a valium and go to sleep?
How to turn off the loop in my head?
Cancer cancer cancer
Cancer cancer cancer
Eat dream and breathe cancer
It erases who you were
A professional
A friend
A sister
A daughter
Instead you become the diagnosis
Cancer cancer cancer
A reader
A writer
A mentor
Cancer cancer cancer
Consuming you
Destroying you
Shredding you to bits
Tearing away all of your softest spots
Leaving you with only the hardest pieces
Cancer cancer cancer
It leaves you with nothing but stone
They don’t tell you that you will have to be stronger than you have ever been
That the scars will harden you
Preparing you for the fight of your literal life
It will be quiet
Whispers and murmured euphemisms
So many prayers and thoughts
Overflowing good vibes and warm fuzzies
They won’t tell you any of these things.
- 11 June 2020
That's my stuff for today. I hope you have a good day. Love you guys!
June 17, 2020
Self care: not just about bubble baths and mani/pedis
June 15, 2020
Physical therapy
June 11, 2020
Inspired and motivated and random thoughts
June 6, 2020
Original poem, and a commentary on quarantine
discarded mask
disgusted by the disposable nature of safety
one year ago I would not have needed the muzzle
keeping me in
keeping you out
stifled by hot breath
disgusted by myself
why is it I have to burp every time I put on the mask?
disappointed in protesters who disrespect my condition for their "constitutional rights"
Freedom to kill me
dissolves my Freedom to be
I long for before
1 impatiently wait for after
unable to mask my disgust at the unmasked-
so afraid of
every cough, every sneeze.
- 21 May 2020
I wrote this for my writing group a few weeks ago, and I want to talk about this coronapocalypse. Now, I know that people are stir crazy, fighting cabin fever, and trying to figure out how not to dropkick their kids out the window.
The thing is I've been essentially on lock-down, self-quarantining since flu season started. I go out every once in a while with The Husband, with my reusable washable mask, and tons of hand sanitizer. Our trips out are quick and purpose-driven, and involve very little in the way of meandering. Since I've been essentially in isolation since December (I think?), I've become very uncomfortable being in public. People cough, sneeze, and breathe on all kinds of things that I don't even want to think about. So essentially I stay in my house.
On top of all of that, I just recently started anOTHER new chemo protocol. Plus my wonderful oncology team has so kindly added even more pills to take every day.
I've got uppers, downers, anti-inflammatory pills, antacids, the whole lot. This new treatment protocol is HARD. Not to get into too much whiny detail, but sometimes it feels like drowning under the weight of it all. I've been trying to keep up with people as much as I have the time and energy to do so, but y'all, I am tired. There is nothing interesting happening, and because I am even more immunocompromised than before, I really just don't trust going out in the public. If one flu virus or strep germ gets to me, it could be incredibly dangerous.
So, that being said, I know that I've been pretty radio silent for a while. I know there is a whole apocalypse happening out there in the world. My silence doesn't mean I don't notice what is happening out there. My silence means that I have my actual literal brain as my top priority right now. That is all I can focus on at the moment, and you know what, I have actual literal brain cancer. I think this focus is fair.