Apparently yesterday was the dark moon. I read all about it on Danielle Laporte’s Instagram page.
“It is the time of the month when the moon is reflecting the least amount of light. In esoteric terms it’s when the light versus the dark and it’s the “darkest before the dawn”. After a dark moon a crescent moon of light forms. Dark moon days can feel like struggles of opposites, and real ass-kickers.”
Yep it was a dark moon, and a fucking MRI day.
It has been an all around tough week and truthfully a tough transition back to reality after our Mexican adventure.
Going away and having our ’90 day plan’ is crucial to our sanity, but it does make stepping back into the ‘shit show’ that is our life that much harder.
This week for some unknown reason Logan’s face started to swell. She is also day 21 in the chemo cycle so her counts are starting to plummet and she feels like ass.
We spent some time in the ER this week, then returned to hospital have our own doctor take a look at her. As usual everyone is baffled by Logan’s mystery symptoms and swollen face.
An oncologist we’ve never seen before casually suggested “Sometimes in the medical world it is OK not knowing why symptoms occur.”
No, I didn’t punch her in the face but I did break out hives and almost swallow my tongue whole as told her how her words made me feel.
Then, I took to Facebook and wrote a long rant about her bedside manner which I later deleted. Writing is my release but it wasn’t entirely fair to her. I think she got it. We all get to make mistakes but I learned we all have the right to be heard.
I am pretty sure in the end the whole situation was a learning opportunity for both of us. I am leaving it at that.
Of course, I was panicked.
My kid’s head was swollen.
She looked somewhere between an Avatar and Rocky from the 1985 movie ‘Mask’ (Hmmm…come to think of it I’d play a good Rusty Dennis in the remake). I may have been a bit bitchy in my presentation to the ER oncologist that day, but for good reason. Had Logan’s toe been swollen I wouldn’t have given her the gears, or spent my sunny holiday Monday paging ‘on call’ residents.
Did I really need to tell them?
“She has a fucking brain tumour, people!!!”
They knew, but as residents they avoided the conversation like the plague. Her MRI was already booked and god only knows no ‘first year’ want’s to be the one to bump a major scan up by 2 days for no good reason. Instead, they offered to admit us.
I told them I needed a glass of wine🍷 and I’d take my swollen kid home. The conversation ended there.
Two days have felt like forever. I could hardly look at Loggie because the fear of what was really going on would literally bubble up from the pit in my stomach through my esophagus and I could taste the bile.
“Fuck me. Her tumour is growing and this is hydrocephalus.” I told myself.
“Stop it Jenny. It’s nothing…… no wait, maybe her tumour is coming out of her nose, maybe that weird healer you had stay with you years ago telepathically felt Logan was sick again and she’s sucking it out or eating it or whatever the hell she said she could do all the way from across the country…..” My mind paused. “Healers can do that shit, right?”
I paced around my house.
I ironed my bed sheets.
“Nope, this is the beginning of the end. Prepare yourself. It IS the end. By this time next week she will be in surgery, and then the ICU and then what? Do we do POG study? Will she need a shunt? Fuck me, I should text Dr. Rod on Facebook…..No Jenny, you can’t text Dr. Rod. He cannot diagnose via social media. Get a grip. Not fair….. Don’t text Dr. Rod”
Finally, MRI day arrived and it was a dark moon.
Apparently my only saving grace was that the very next day it was the crescent moon. New beginning, more light. “Hang on Jenny” I told myself all day.
Loggie got blood.
None of her infection markers indicated she caught some random disease in Mexico (Thank God or we’d never get another recreational ‘top up’ to catch a flight to paradise.) She hadn’t blown an eardrum and there was no abscess in her sinus cavity. She wasn’t having an allergic reaction. There was NO known reason for the swelling.
All we could do was wait for the MRI.
The last 24 hours have been some of the longest hours of my life.
Fuck the dark moon and Fuck the crescent moon too.
In the cancer world, there really isn’t a whole lot of light after the darkness. Especially when you are in the thick of it. There is only intense darkness and then there is a new day. And some days are filled with more intense darkness and some days are a little less dim but mostly they are the same. You need to be a fucking lotus flower and grow in the darkness and mud. You can’t wait for the light. Ever. Period.
So, now, we don’t have the full report from Loggie’s scan yet but we do know that there isn’t a new massive tumour causing her to look like an Avatar.
We also know that the rest of her tumour looks somewhat the same. There is no new worry about the frontal lobe, that unexpected lesion has not grown. The big asshole tumour in the brainstem also has not shrunk or grown, and what felt like they may have been ‘throwing us a bone’ was just hesitation when they said there may be a little LESS signal abnormality on the left side of her pons.
I started to cry.
And then I was reminded about picture splices. They are always slightly different so the pons could actually just be the same.
We were instructed to celebrate with wine and ice cream, but maybe only one glass and one scoop.
Hmmm new concept. Maybe not “Cheers!!!” but ” Go ahead and crack a 30 dollar bottle tonight instead of a 15 dollar one, right?”
Our oncologist told me she was reaching out to the radiologist to discuss the finalized report later this afternoon but wanted to call me this morning to let me know there would be no ICU or surgery this weekend. Logan didn’t look like Rocky from the movie Mask because there was a new tumour and her old one wasn’t coming out of her nose.
She told me to breathe.
I let out a giant moan before I hung up.
At first I felt super relieved and maybe even a bit happy. “To hell with the swelling!!! Sometimes in medicine we are comfortable without knowing what is causing symptoms”
I will go with that..
But then it came rushing in….so fast and so harsh.
Why am I so angry now???
I have pondered it all day and
The truth is (#2) Sometimes feelings in themselves are a paradox.
They contradict each other and you feel them both at the very same time.
You can be happy and relieved and sad and ripped off in the exact moment.
You can be grateful, and bitter.
You can be both afraid of life without your child and afraid of what life will be like if they continue to live. You just fear it all. The unknown is consuming and terrifying.
(Hardest statement I’ve ever wrote or admitted but so true)
Cancer is not fair and it’s really hard. It doesn’t let up. Ever.
There is no good alternative when you are living with this beast but to face it.
You do the best you can and some days, you live in the shadow of the dark moon and other days your crescent moon comes midway through the month and not very next morning.
You can beat yourself up for feeling sad when you should feel happy and you can feel shitty for saying thank you to your doctors when all you really want to say is Fuck you!!!
Stable is good when you know it is all you are going to get, but stable NOW is not as good as stable was 2 years ago. So it is relative and ever changing.
Logan now requires twenty-four hour, round the clock, care and that sucks.
Every day brings something new and the reality is, one moment you can be speaking with your oncologist who is telling you to breathe and the next the respirologist is calling to tell you your kid failed her breathing test and you need to come back for another follow up (Yes, that happened today).
Feelings can really mess with you if you don’t understand them.
I am only just beginning to figure out my own.
Today I feel sad, when I should feel happy and that is OK, because it is the truth.
I am sad for every single time I have to move the bar, or accept what is unacceptable and celebrate when all I want to do is crawl in a hole.
I want my kid to beat cancer, and be normal and healthy and independent.
I want this to be a bump in the road of her life and not the whole fucking highway.
I want to cure her and shelter her from all the pain.
I want to protect her.
I want to log into to her social media and clear her fucking newsfeed of cancer stories. I don’t want her to know anyone else who lost their battle and for fuck sakes I don’t want her to lose hers.
I want to run upstairs into her bedroom out of breath and tell her all of her strength and hard work has finally paid off. She’s winning her fight.
I want tell her, the cancer has shrunk and she’s beating this. ONCE AND FOR ALL!
I want to hug her brother with good news.
I want to see the relief in Jared’s eyes.
I want to feel the joy deep in my gut and I want it to replace all the fear and sadness forever.
I want my conversations to start with “When Logan HAD cancer….” and reflect on it in the past instead of knowing it is our present reality.
And, for now, it can’t be this way, and ALL of this pains me. ALL OF IT.
I need to suffer and cut myself some slack because I am. I am fucking sad and angry and today, I am bitter.
So I need to show myself some compassion, and do so without giving into pity.
I don’t need to rally to be strong today and I am not going to.
I have asked for some time to be alone to be sad and that is what I am doing.
I am being a friend to myself. I haven’t spoke to anyone about this today.
I have thought about what I would say if I was a friend of mine instead of just me.
If they called me and were sad and hurt and had a terrible day, what would I say??
I would never tell them to suck it up (ok well maybe I would…. but not right out the gate). If someone truly needed my shoulder to lean on I’d give it to them and I’d tell them how sorry I was for their pain. I would feel it with them.
I owe myself that much.
So today I am giving it to myself.
I am talking to myself like a friend.
“Jenny, I am sorry for your pain. It is ok to be sad and not feel strong. It is ok to feel terrible the MRI isn’t better and that you aren’t happy for even the smallest positive/‘stable’ comments. It is ok that you are still afraid of what the future may bring. It is ok to not want to bear this burden any longer and it is ok not to feel like the best cancer mom ever. You are heartbroken for yourself and for Loggie and for Jared and Brody all at the same time and it is ok.”
“Feel that shit Jenny. Own it. let it penetrate and let it bake….feel it all so fucking hard and deeply….. so you can let it go and move forward….”
Feelings can be a paradox, but what I know for sure is there is no space to manage all of them for any length of time.
Each vie for your undivided attention. They are as relentless as a toddler wanting to be heard.
Feelings need to be honored and acknowledged for what they are.
Suffering screams for recognition.
When you are sad, you need to hold yourself tight and give love and when you are happy you need to hold yourself up and ride that fucking wave.
Trying to juggle and tell yourself ‘you should’ is messy. It only causes anxiety and unsettledness and a feeling of inadequacy.
I know that. For sure. I know it to be true.
So today, I am giving myself some much needed compassion while I cry through this blog and through my feelings. It is what it is. My feelings are a paradox.
I appreciate all the love I know each of you following will send our family tonight.
These quotes from German philosopher Friedrich Neitzsche remind me of my sweet Loggie and often give me strength.
I pass them on to you tonight.
“To live is to suffer, to survive is to find some meaning in the suffering.”
“Whoever battles with monsters had better see that it does not turn him into a monster. And if you gaze long into an abyss, the abyss will gaze back into you”
And we will stumble forward….