The truth is (#2) Feelings can be a paradox.

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.

Doozy.😩

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”

Ugh……

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.

Sigh.

We were instructed to celebrate with wine and ice cream, but maybe only one glass and one scoop.

Cautiously celebrate…..

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.

Silence.

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….

With Love,❤️❤️

J

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The Truth is~ Freedom (#1)

When I started writing this blog again over a year ago, I did so because wanted to share all of the things I have learned in the decade since my child was diagnosed with cancer.

I felt ready to unleash the carefully detailed list of wisdoms I had organized for years and my goal was to incorporate our love of travel with the advice I wanted to share.

I am hopeless when it comes to controlling my urge to analyze. I am always thinking, always writing in my journal and always contemplating.

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At times I have been told I am ‘a bit much’ but I have also been told I am a great assessor. I may be both but I like the sounds of the latter. 😜

My innate ability to know what needs to get done serves me well in my life. It has been presentation and communication that have been my challenge. Hence, my obsession with writing and keeping my thoughts in a safe and guarded place began.

Most of what I choose to share on this blog, is mainly about our family, our experience and challenges throughout this cancer journey (God- I despise that word 😩) but what I really want to write about is much deeper than that.

I have a list.

It is a running list and one that I have been working on for almost 12 years. In my pages I call it ‘The 50 things I’ve learned since my kid got sick’.

It actually has 432 items on it (I am exaggerating but you get the point). 😉

This list has been an evolution and over the years these ‘50 things’ have been all about understanding and trusting my own inner discernment. They have shaped who I am today and for the most part what I believe to be my own personal truth.

So, when Logan was re-diagnosed and cancer hit us for the fourth time, I thought I was prepared.

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I mean, I have my own fucking list. I should be prepared. Right?

I believed in my epiphanies and thought they were reason for starting this blog. I was ready to share them and turn those 50 blogs into a published book.

I had decade of experience under my belt and in my head I was a veteran and some kind of a cancer-mom guru.

God!!!!  I was so in my head that I didn’t know what I didn’t know.

They say, a lesson never goes away until you learn it, and it’s true.

I went into this, list in hand, feeling cocky, ready and full of ego.

What I learned (very quickly) is that cancer hates cocky and the truth is, I had still have no bloody clue how to handle all this. I have so much to learn (and probably always will)❤️

The thing is, life is always changing.

Some of the items on my list have been scratched and replaced. Others are as true for me today as they were when I first acknowledged them. But my biggest realization was that a huge chunk of my wisdom, was just total bullshit that I desperately wanted to be true.

Shit that I thought if I preached enough about would finally sink in and make me evolved enough to fake my way through.

But, unfortunately, fake is not how it works when you are in search of enlightenment, or happiness, or contentment or whatever you want to call it and cancer for the fourth time is not a breeze.

In fact, it is the opposite of a breeze, it is freaking hurricane.

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The stakes are higher and we don’t have time to waste. Emotions are more fragile and each day feels very different. Fear vibrates at a much more intense frequency and ‘living in the moment’ is actually a thing.

There is so much less time for bullshit now. There is less time for figuring it all out.

It is go time.

I can’t do complicated drama or worrying what people think or upsetting the apple cart any more because I simply have no space. Yet, ironically every single thing that isn’t working in my life is also amplified.

But I am no longer in a wishy washy state of “what will they think of me?”or “I can’t do that because I don’t want to be judged” and I’m pretty much done with people pleasing so there is some growth to report. 😉😉

Now, instead of my uncertainty, I am ready to share what I have come to know in an honest and truthful way and I ‘get’ that how others view me or my opinion is not mine to own.

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It is not because I don’t give a rat’s ass what others think of me (I don’t believe we ever really ‘get’ there or at least I never want to) or not because I want to pass the buck or blame but instead, because I am open to being vulnerable.

And in doing so, I am hoping to let go of the fear of being judged.

You may think I am full of crap and that is OK. I have set my own intention of living outside of my comfort zone and I am going with it. Apparently that is where the magic happens. 😩😩

My hope is that by sharing my thoughts and experiences, dreams and heartbreaks in a truthful way that some of you can relate and connect and that maybe one day these blogs will manifest into something with purpose.

My fear, is the judgment and criticism that my writing will not be ‘good enough’ or people will think I am not qualified to share or solicit this information. Basically, my ego is saying “Who the hell do you think you are?” while my heart is saying “Who the fuck cares, go for it.”

Telling the truth is really, really hard.

In the twelve years Logan’s had cancer, shoveling through the BS to get to the truth has been the hardest thing I’ve ever done. Learning that every single feeling I have starts with me, and isn’t about anyone else is profound.

Being honest enough to sift through the mounds of pain to face my own crap is really all about exposure and vulnerability and no one wants to go there because it is where shame, pity, and fear and all the other gross emotions live. Doing this also doesn’t mean it is going to fix anything- so that in itself  makes being exposed even harder.

We all have stories to tell and we all portray certain versions of who we really are to the world. Most of us hold back, and protect ourselves and choose to show the best versions of ourselves.

It’s why social media can be so tricky.

But it is also why it is important to realize the truth is different for each of us.

Having a kid with cancer has no doubt helped me filter through some serious horseshit and come to a place where I can say this is ‘me’ but it has also made me face a whole lot of stuff I really don’t like about myself.

These are my truths, my 50 things (or maybe more 😳) and I am finally ready to share.

Beware, they may or may not resonate with you, so take what you want and leave the rest behind, just try not to be mean about it.😉

Each blog moving forward will incorporate “THE TRUTH IS ” -one of my 50 things.

Of course, I will continue to update you on Loggie’s health and our family’s adventures because it is in line with the goal of this blog. I want to demonstrate that you can have a ‘life all over the map’ and still have fun, while embracing and living a better than ok existence despite challenges.

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But this blog is also my own words and I feel an obligation to myself to not brush over the big life lessons I have learned.

So, here goes nothing…..

We are just past midway point in the chemo regimen and Loggie has had another 17 doses of treatment this weekend. We are just back from an epic couple of weeks in Mexico and now she feels like crap. It is hard to watch her go from carefree and happy and alive to sick and fragile and broken so quickly. Cancer sucks.

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Mexico was not all perfect but at the same time it was awesome. Logan had good days and bad. There were times when we worried desperately about having her in extreme heat, or the sanitation issues in Sayulita. There were moments when Mexican waiters came running out to the street with a chair and a bottle of water to assist as Logan wobbled unsteadily (her goal was no wheelchair) and there were days when Jared and I squabbled about who had to check PH, flush her line and do her meds because we both wanted a ‘full on’ holiday from cancer.

But overall, it was a one of our best vacations ever because that is how we chose to see it.

You see, THE TRUTH IS (#1) is a quote that is etched in the teen room of the oncology clinic.IMG_6052.JPG

For the last year I have been doing some serious personal work (yes I know I have obligations but I am also so much more than a mom/momcologist).

I have been reading self help books, contemplating my connection to the universe, going on unexpected trips to foreign lands, and trying my damnedest to figure out what it is that I want to feel instead of what I want to have. I am trying to let go of expectation, figure out acceptance and learn how to #rollwithit.

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And in doing so I came up with ‘my’ word.

Freedom.

Freedom is what I want, but it also seems like the most ridiculous word for a mom with a kid with cancer to choose.

The word in itself feels selfish, unreasonable and like I am setting myself up for failure and disappointment.

I have absolutely no freedom in every sense of the word.

After almost twenty years of parenting I can’t even leave my child alone to go to the grocery store. I have had to give up on my career to be a stay a home mom, which was an identity crisis in itself. I never have any ‘me’ time, and I feel super envious when I hear of couples going away on vacation or doing cool shit together because the Jayrod and I never get any carefree or alone time.

The years Logan was ‘stable’ and I should have had some freedom, I didn’t. Instead, I chose to become a complete maniac. My bad.

I was desperate to use this time appropriately. I focused on getting her set up. So much so, that I missed the opportunity of freedom that was right in front of me.

I clawed into every resource I could find to get her through high school, then accepted into college, and I reached out to those I knew could help her get a job in her field. I fought tooth and nail to get her approved as someone with a permanent disability (and not just a critical illness) so her medication wouldn’t financially devastate her or us. I fought for a small pension to subsidize her working income with the hopes it would give her even more possibility. Jared and I sold our RV and pillaged our savings to buy a condo in Kelowna as a rental with the long-term goal of housing for Loggie.

Freedom has always been my goal.

If I could just get all my ducks in a row, and get all the shit piles sorted then I could finally feel the independence I so desperately desire. Right?

Bull shit.

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The truth is, in those five years of ‘stability’ I should have been embracing the freedom I had from cancer but instead I raced around preparing for it so when everything was perfect and fell into place I would finally be able to enjoy it.

Guess what I learned? Nothing in life is ever perfect.

And all I did while in pursuit was make myself really, really depressed.

Yep. I fell into a deep depression.

I wasn’t sleeping. I wasn’t eating properly. My anxiety was absolutely through the roof.

I was seeing, not ONE, but TWO therapists and I was taking handfuls of medications every day just trying to keep my shit together.

On the outside, I looked like the same Jenny, high functioning, demanding, overcompensating and an advocate for Logan but on the inside I was floundering.

Everything was being taken care of, except for myself.

Logan had acquired more freedom then ever. Jared and Brody did too. They were able to take much needed breaks from the hospital and cancer in general to focus on work, school and normalcy.

But for me, I was feeling more trapped than ever.

I obsessed with the idea of freedom yet all I could focus on what how little of it I actually had.

Ironic, right?

And all I learned from it was that freedom is not something that happens once you actually arrive at a certain destination. It is not something that happens once the mortgage is paid, or once the kids move out, or once the freaking brain cancer is cured.

Freedom starts in the space between your own mind and heart and it begins with acknowledging what actually ‘is’.

The profound quote etched in the glass in the oncology clinic at Children’s hospital says

The last of human freedoms -The ability to chose one’s attitude in a given set of circumstances.Viktor E Frankl

I read it again this week literally had a gut wrenching AH HA Oprah freakin’ Winfrey moment.

I was sitting with Loggie, and our child life therapist and a mom who has been also been coming to the clinic for 12 years with her son. I looked over at her boy and my girl and as I read the words I felt almost panicked.

I walked outside, down the hall, sat on a chair in the parent shower room and sobbed in private. Everyone had been commenting on how great Logan and I looked returning from holidays. This woman whose son has been fighting some form of cancer since he was six months old seemed incredibly nervous and agitated yet her son seemed so calm and patient. There were parents casually playing with their kids hooked up to chemo, totally normal conversations going on. Nurses laughing and smiling, and the sound of a kid crying during a procedure and all of this was happening around me in such a totally fucking abnormal space and I totally ‘got it’.

I am not in search of the freedom I think I am.

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The freedom I desire is already inside of me and it’s all about making a conscious decision to connected with it every day.

It is not about being polly-anna positive.

It is not about waking up in the morning, looking in the mirror and choosing to be happy despite living a total shit show.

It is about being honest, and truthful, and vulnerable and feeling it all. Not sluffing it off.

It is about truth.

It is about seizing the good moments and letting yourself off the fucking hook when things go sideways and you can’t handle it all.

Freedom is about allowing your self the time and space you need. It is being open to opportunity and living from a place of ‘yes’ while focusing on possibility and hope instead of defeat and despair.

The truth is, freedom is not one single thing on the outside of us. We can never arrive at it, no matter how much money we save, or how many trips around the world we take (I still do want to go 🌎)or no matter how much cool shit we acquire.

Freedom is a choice. Everything else stems from there.

I believe freedom is also a feeling. A knowing it’s going to be ok.

That no matter what happens on the outside and even when you have nothing left that feels good you still have a choice on how you are going to respond. It doesn’t matter if your initial response to a situation sucks, you always have another choice. It’s endless and infinite and that in itself is is freedom- BABY!!!

Logan absolutely knows this wisdom. It is why she is so peaceful and accepting of her disease. She has freedom from her cancer despite living through it every day-  all her life.

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And for me, I am just starting to ‘get’ it but I am grateful for the knowledge.

I am a work in progress, but I am also one step closer to living the full potential of my word and that in itself feels freeing enough.

❤️🌎✌🏻

 

 

 

 

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