Do Epic Sh*t

Riding the cancer rollercoaster can be exhausting. Things go from bad to worse to good to great all the time.

Sometimes it is in a day.

Sometimes it is in an hour.

Sometimes we live our life moment to moment.

Our motto of #rollwithit is really about being open and remembering everything is temporary. The bad moments will pass and the good ones come along for us to savor and embrace.

There is no balance. It doesn’t exist in our world. Moments go from complete darkness to blinding light.

Sadness to happiness. Fear to hope.

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Last week I had a long meeting with Logan’s oncologist about her recent MRI and we discussed realistic goals 😩😩😩 and this week we spent and entire day with Johnny Depp. (For real!?!?! WTF!)

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How does one even process the insanity, inconsistency and contradiction that happens to be our life?

It is crazy.

Log’s MRI was filled with good news but there was also some really bad news.

I left the meeting with our oncologist feeling torn and somewhat broken yet incredibly hopeful and optimistic.

In one sentence I was told her scan was mainly stable with some mild continued improvement in the right anterior pons (the area of the brain we are pretty sure has caused her sudden decline). I was on cloud nine.

And then, just as quickly I was given the bad news and my hope was ripped away.

Her organs are in distress and it is unclear how many more doses of chemotherapy she can endure. There is concern for her liver (god only knows I thought we’d be having a discussion about mine first😩🍷🍷) her bone marrow, her kidneys and her lungs.

Almost 300 doses of chemotherapy is taking a huge toll.

I could go into a ton of detail about what this means but basically what it comes down to is a balance between killing the cancer and not killing your child.

Juliette (our oncologist) encouraged me to really think about what ‘goals’ we as a family, have with this treatment.

She encouraged me to reach out further to Canuck Place for support and respite.

To Prepare.

She discussed the uncertainty of what might lie ahead.

She reiterated the reality that a ‘cancer free’ life is not likely and that chemo is not a cure.

She reinforced what we already know- we are simply buying time.

What the time looks like and how much we have is still anyone’s guess.

She told us we’d reached a fork in the road.

There is no choice but to lower the dose of chemotherapy to protect Logan’s organs from failure. She also gave us the option of stopping treatment altogether.

She assured me in our situation there is no right answer and there was no way I could ever make a wrong choice.

I felt like someone punched me in the gut.

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“But, she is doing so much better” I said.

She agreed.

I threw around different and obvious scenarios about what would happen if we stopped treatment.

I felt so puzzled

“So, the MRI looks better and clinically Logan is doing much better, so it is pretty safe to say the chemo is working, right?”

She nodded again.

“But if we continue giving her chemo she may go into organ failure or we may do irreversible damage and then we may end up a totally different shit creek?”

Again, the same nod.

“This is where it gets tricky. It is a delicate balance. There is no right or wrong now. This is where we talk about goals and dreams and hopes and what you, as a family, want to achieve.”

She tried to be encouraging and humorous, reminding me of how many times she had been wrong and Logan had beat the odds but it didn’t work.

I know this time is very different then any place we have ever been. She does too.

I started to cry.

“I don’t want to talk about fucking goals- especially with you.” a primal squeal escaped my mouth.

She didn’t say a word.

“I mean, I hate talking to you about goals because I know you think our hopes and goals and dreams are impossible and telling you makes me feel crazy and slightly delusional.”

I paused to look up at her. I could tell she was trying to holding back her own tears.

“You have no idea what this is like. I see you every few weeks or months and you don’t get to measure our life with pictures or blood tests or exams. Your goals are not the same as ours.”

It remained silent and she looked really sad. I could tell she knew saying nothing was best.

She has had this conversation many times before and she has experience navigating it. Knowing this infuriated me.

“You don’t know how hard this is. You get to do your job and go back to your healthy kids and your great f’ing life”

I felt bad for attacking her. I know logically this isn’t her fault but I couldn’t stop myself.

“When we lay in bed at night as a family, we don’t talk about Logan dying. We talk about when she gets better and what our next adventure will be. We talk about Logan being well enough to take a trip around the world. We laugh about running away and having so much fun together. We talk about all the places we want to see together and the cool shit we still want to. We talk about volunteering in Africa and eating gelato for breakfast in Italy and doing yoga in Bali. We talk about Jared quitting his mundane job that he has been forced to keep to pay our stupid bills and we talk about Brody blowing off school for a year and getting a real life education. What we talk about is forgetting about this bloody hospital and cancer and this whole life. We talk about checking out, and taking a freaking break and regrouping. We dream about freedom.”

At this point, I was crying so hard I had full blown hives and snot running down my cheek. I was slobbering and stuttering and shaking.

“We want Logan to get better enough so we can go travel for one solid year. That, Juliette is OUR secret, private fucking goal!!!! We want ONE month away for every year she has been sick, 12 months for 12 years, and I hate that I am forced to sit here in this windowless room and listen to you discuss trips to Canuck place when I have been telling my kids our trips are going to be to see the orangutans in Borneo.”

I paused to catch my breath.

“I don’t know if I am in total denial or if cancer has made me half ass crazy or if you just aren’t on our side or if you don’t ever really see us at all?”

My tone softened “How can you not already know our goals? It has been twelve flipping years? Life all over the map is our fucking goal!”

I let out a long sigh and a slight moan and I looked up from the ball of Kleenex I had torn apart in my hand feeling slightly ashamed of my language.

She was smiling and her words were comforting. The energy shifted.

“Well then….. I guess we don’t need to discuss any more goals today. You clearly already have them. Please, do try to consider taking a little more down time at Canuck place. This is beyond exhausting and at the very least you deserve a cooked meal.” She wrote some notes in her file. “But in the meantime, we will need to start teaching you and Logan how to change her feeding tube without nursing assistance. I assume she’s going to continue to need it for the unforeseeable future and a G tube insertion won’t be great option if she wants to swim in the ocean on her trip around the world. When it is time I will reach out to my colleagues in different countries and see what they can do to help you get the medications you will need. If we can, we will figure out this plan and work towards your goal. What is your timeline?”

I couldn’t answer because I was so shocked.

Juliette is never like this.

EVER.

She is cautious beyond reason and maybe she just threw me as a life line to keep me from a complete meltdown. I don’t know, or care, because I love her for it.

Just like an alzheimer’s patient doesn’t want to hear they are confused, a cancer mom doesn’t want to hear about a life with out their child.

She said exactly what I needed to hear. She would try to work with us. That is good enough and I won’t ask for more.

We notched out a loose plan to move ahead with another round of chemo, albeit a lower dose, and continue to monitor her organs a little more closely while planning our epic around the world tour. We will aim to get Logan strong enough to leave sometime within the first six months of 2018.

We left the hospital and went straight to Staples and bought a map.

IMG_8363Maybe this is just a dream.

Maybe an around the world trip might never happen and maybe we are crazy for even thinking it can but we are going to plan for it anyway.

It gives us something to daydream about, something to hope for and something to strive to work towards and something to talk about. The ultimate 90 day plan.

It is our own personal, perfect and insane goal.

I honestly don’t think it will be that hard to achieve. I mean wejust have a few hiccups to work through….

  1. Cancer
  2. Treatment
  3. Medication
  4. Work
  5. School
  6. Money!?

No biggie, right?😉👊🏻

In the meantime, we will continue to live in this moment. We know its not all about the big stuff. The everday stuff is what really matters and we aren’t going to let it pass us by. Living  the best life we possibly can means finding fun and possibility and opportunity and comfort in the mundane.

None of us will ever be able to know in advance what life may bring.

One day you could find yourself planning end of life bullshit and the next day you have to pinch yourself because some A list celebrity is sitting next to you wearing a hat with your website and motto on it telling you dreams can be become possibilities and to just look at him and continue to believe and not give up hope. Ummmm- ok 😉

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I feel so mixed up.

The past 7 days have been a whirlwind of extreme emotion and everything feels surreal.

Super highs and super lows.

I reached out to my good friend and tribe member Heather for comfort and advice. She is a cancer survivor, a brilliant mind and one of the kindest hearts I’ve ever met.

It took her a few days to respond to my news about Log’s MRI but when she did her words were perfect.

When I was a little girl, I remember learning about the Buddhist practice of perfecting sand art- only to brush it all away when finished. I remember being baffled by the triviality of this act and scoffing at the perceived waste of time. As I’ve grown older my thoughts often return to this practice and I feel I understand it more and more.

We spend the time gifted to us constructing these beautiful intricate lives and it feels like such a cruelty when the artistry is swept clean. We want to hold on to what we have created, to keep it close to us because is so lovely and we’ve worked so hard on the construction. And yet it is the action of creating that matters in the end- not what remains.”

And so we will… simply, continue to create.

This life.

Our life.

As it is today and for what we want tomorrow

We will plan.

We will dream.

We will hope.

We will allow the artistry to be swept clean when it needs to be and then we will start fresh once again.

We will continue to #rollwithit

Because, after all, it is the only thing any of us can ever really do.

Much love,

J❤️❤️🤞🤞

P.s. Yes, Johnny Depp is super rad and Logan has decided he’s basically her boyfriend now. 😘❤️

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Some things never get easier~ MRI day.

It doesn’t matter how many times I have sat in the MRI waiting room, I always feel panicked.

I don’t know why but every single time I enter that room there is a sudden pulsation of fear that overcomes me and I literally feel like I am going to lose my shit.

The MRI waiting room isn’t a scary place and theoretically it isn’t any different than any other waiting area in the hospital but it doesn’t matter. I loathe this room and almost choke on the lump that forms in my throat every time I have to sit in there.

Maybe, because I know even though it looks the same as all the others, it is different.

It is a room that carries a hefty, weighty, stressful energy and I sense it in every fiber of my being.

It is where families go to measure progress or confirm their worst fears.

No one gets an MRI because something isn’t wrong.

An MRI is a big test and it holds clout.

Despite any pacifying from doctors, the pictures that come from the scan make almost all the treatment decisions.

Knowing this means I can almost feel the banging of the machine through the thick painted cement walls when they fire up the machine.

The thud of the metal door from the waiting room to the radiologists desk seems to close harder than any other door in the hospital and every time it does I consciously think to myself, “You have to let it go Jenny. It already is whatever it is going to be. ”

Only I never can just let it go.

It is impossible.

Instead, I stew in my fear and worry and sit in that room which feels like torture and limbo combined.

It is hard to explain the intensity of the wait between a scan and the report but if you have ever experienced these moments, you will know what I mean.

I used to go into the scan with Logan every time she had one.

I used to think I could tell by the facial expressions of the technicians what the pictures were showing. I used to drive myself crazy trying to see a reflection in the glass between the machine and the computer screens as the images appeared.

I used to be so desperate to know the results, I felt like I was going insane from the sound of the machine as it began to hammer.

Now, I just sit silently outside in the irritating, confined waiting room trying to calm my own nerves.

I don’t exactly know why or even when I decided to start sitting outside the scan but today I realized it is no easier than being beside her.

It is all I can do to not to throat punch the parents who turn The Wiggles on the TV full volume while ignoring their kids who are throwing around plastic toys and playing the xylophone.

It is all I can do but wonder, “How the fuck does one cope with this? How the fuck do I cope? Am I even coping?”

MRI day and business trip= no coping and no shoes 😳

Today, I tried to be super evolved and self aware. I  journaled my way through my stay in the MRI waiting room. I was in the midst of writing through my feelings of why the room freaks me out so much when it all hit me.

I had just run into DR. Rod in the hall.

The kids and I were taking a selfie outside the MRI room when he came up and joked about our lighting and our angle.

“Where are you off to?” I asked him

“ICU.” He replied with a slight head tilt.

ICU is shittier than MRI. We both know it.

I looked down the long hallway with the stars on the wall indicating the route.

We’ve been there.

Actually, I think we’ve left MRI and very quickly been admitted into the ICU or vice versa.

It hit me like a ton of bricks.

MRI is so fucking scary because it is the moment when you realize the magnitude of the situation you are facing.

MRI reiterates that you are caught between living life (and walking out of the front door of the lobby) and facing death (and heading down the hall to follow the stars to the ICU)

So, it is just “holy fuck!!”

MRI should be scary simply because it is…..

Super Scary. Period.

And another scan is now done and yes I am typing this while drinking a glass of wine.🍷

This glass of wine is from a neighbor who left me bottle at my doorstep because she totally  knew I would need it tonight. Thank the dear lord for moving me next door to Lesley.

Believe it or not I am not as nervous about this scan as I usually am.

I think I know what to expect.

Logan is doing better than she was, but she is also a long way from where she needs to be.

We are just plugging along (having as much fun as we can, when we can). Which is all I think we can do at this point.

I really am expecting a ‘status quo’ report.

But expecting and wishing are two different things and the crazy thing is, as I write this I am reminded how I don’t know what to wish for.

Of course, I wish her cancer would just disappear.

I always do and I’d be a shitty parent if I didn’t, but what if tomorrow I found out it was all gone and this Loggie is the Loggie we were left with.

Would it be enough? Would we feel like we  had won the battle?

Logan is so far from where she needs to be.

Could I accept where we are at today as the ultimate success and rest of our lives or as I sit here tonight should I be wishing to find out Friday we are only making progress on the road to the cure?

I don’t know.

What I truly wish for is for a life that wasn’t ever about cancer.

I wish this disease wasn’t part of our personal equation, but it is.

And reality has a shitty way of being real so there is no point in wishing for something that can’t be possible.

So, what I am left with is I don’t know what to wish for and I have finally decided that is ok because sometimes wishing is just a recipe for disappointment.

Maybe my therapist will help me to better understand this question.

Poor thing had a cancellation tomorrow and called me in at last minute.

My first thought when I got her message was “SCREW YOU UNIVERSE!!!😩😩😩.” But then I also said a silent thank you.😉

Good timing. I know I need it.

Results come Friday and the day between the scan and the report can be a doozy.

On that note, the new hospital is almost built and ready for patients to move in.

Do you think it is too late to suggest they make sure the MRI machine is no longer next door to the ICU?

 

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The truth is #3 Not feeling sorry for yourself is part of the struggle.

Somebody I really admire once told me “You can have bad days but it doesn’t have to mean you have a bad life”

Her wisdom has stuck with me and thinking with her logic makes it difficult for me feel sorry for myself.

I mean, some days I feel super shitty about our situation because cancer is so fucking challenging.

Every single day is tough and the truth is, as time goes on it only gets tougher.

I hate it.

And I feel sad and angry and more than anything,

I feel tired.

So. FUCKING tired.

Of all of it.

Every aspect.

Providing 24 hour round the clock care is exhausting. Logan’s needs are intense and I feel like I never get a break and its draining and I am torn between wanting to run away and wanting to stay put.

Cancer is consuming.

All. The. Bloody. Time.

Living this life, every single day, truly is a struggle.

An uphill battle.

We may try to make it look easy but the truth is, it is far from easy.

It is a struggle to not let this hardship and the pity and the bitterness I feel eat at the very depth of my core.

It takes effort to not let negative energy penetrate you and strip you of your happiness and joy.

It is hard not to feel ripped off or resentful.

It is a battle.

A weird, internal battle where you can see that you surrounded by so many people who love and care about you, yet you still feel so completely isolated and deeply alone.

You wonder, “Does anyone even ‘get’ the magnitude of this?”

You don’t ever ask because you already know they don’t. They can’t possibly. You take some peace in knowing they never will.

But the struggle is even harder when you try to explain and find the words.

Because, there is no explanation for things you, yourself, don’t even understand.

There are days when you wonder if the fight is worth all the effort you put in.

You know yourself better than anyone and you can feel what is happening.

You are breaking. Slowly.

Your patience is wearing thin.

The pent up frustration you have chips away at you and fragility surfaces. You wear emotion on your cuff. You feel things you’ve never felt. Your feelings can catch you off guard.

You begin to fear what you are praying for.

Yet you still pray.

You pray, every moment, of every single day simply because you don’t know what else to do.

Some days you feel like prayers are useless and fall on deaf ears. More often then spoken in the cancer world things get better and then just as quickly they get worse and life feels like it is flipping you the bird.

Your efforts feel wasted. You look at you child and wonder how fair the decisions you are making really are.

The chemotherapy is now taking such a toll on Logan. Her blood pressure is still very unstable, she’s had another seizure, she is rapidly losing weight and has had to start daily NG feeds again. The intensity and pressure of her headaches are increasing and cognitively she has continued to decline. We have another MRI coming up and although the last one (only 3 months ago) showed improvement, I worry, she has regressed.

Mornings are a really terrible time for her and there are days when I feel like nothing we are doing is moving us in the right direction.

Sometimes, I feel like picture I am painting for the world (and for myself) is not always the truth of our situation.

This leaves me conflicted.

Because the truth is, most of the time our life is a giant mess with fleeting moments of extreme goodness.

It is intense yet jammed up like rush hour traffic. Energy wanting nothing more than to move forward yet forced to be completely stuck.

I wake up after each restless night ready to face the torture of another day knowing accepting the unacceptable will be inevitable. Life is all about adjusting expectations and rolling with the punches and making the best of it.

I am tired of making the best of it.

But as hard as my life is, my kid’s life is harder. I am constantly reminded of this.

So, I suck it up. I feel guilty about my own pity and try to make this life super awesome for her and Brody and Jared.

That is what mom’s (and dads) are supposed to do, regardless of the shit, right?

It is the job we unknowingly sign up for. It is the dark side nobody tells you about parenting. The moment you have a baby, your life is never really about you again.

The truth is….

I have never felt more stuck or unsure in my entire life.

I should be better at this.

I thought hypothetically, if cancer ever happened again as a mom I would have it cooked and handled.

I thought somewhere inside of me, being a cancer mom vet would protect me from the pain of it all.

I thought exposure would make me an expert.

I learned there is no truth to my thoughts or expectations.

I am not better at this.

In fact most days I feel like I totally suck at it.

I feel like I am barely hanging on.

I wonder every single day why I have been chosen for this impossible task.

I think about my own, eight year old, carefree self and all the hopes and dreams I had for my life and I feel so broken to think of the possibility and ignorance I once felt.

This can’t really be it, can it?

In a quest to have it make sense, I spend so much time in contemplation, therapy and in search of a meaning. I read so many books.

Mostly, the work I do on myself and the things I learn only make me feel more lost.

Go figure.

But I do know this is not my story. It is just part of the process.

I know, although I may not always display it and despite what I tell myself, I am a better version of who I used to be.

I am not any worse than I think I am, I am just really hard on myself. I always have been.

It is a lifetime pattern of beating myself up and an unrealistic perfection complex that is now amped up by wanted desperately to save my child’s life and cure her from this horrid disease but knowing it is totally out of my control.

There is no road map, or instruction manual. We are all doing the best we can.

I draw strength from Logan and she truly is the guiding light for this whole family.

Experience, knowledge, and education doesn’t mean shit on a cancer journey but it really does mean something in the whole scheme of life.

This journey (god I hate that word) helps you get better at being the person you want to be, it has nothing to do with being a better cancer mom.

You take less shit because you have no space for it. Your circle gets smaller but the people in it are super rad and you make decisions based on what you want to do right now instead of living in the past or waiting for the future.

You start to feel everything so very deeply and you get better at saying yes when you can and no when you can’t.

You get to be the recipient of people’s kindness and love and compassion.

No one should have to do this four times and going through it time and time again doesn’t make you stronger. It exposes you but that exposure doesn’t always give you the perspective you need and exposure doesn’t make you more equip to handle what you are forced to face.

Cancer doesn’t give you much but the journey through it does.

It teaches you endurance and it makes your search for happiness and purpose that much stronger.

Struggle shapes you.

There is no sense to things that don’t make sense.

Period.

There are things in this world that we can’t begin to understand and there are things in this world we shouldn’t even try to.

We aren’t meant to understand everything.

I don’t know alot for sure, but I do know life is a process bigger than anything any of us have control over.

I believe we might have to do this many times over to figure out the master plan for our own little souls so I think the right thing to do is focus on the good while we are here.

This is why I have a hard time feeling sorry for myself, or Loggie, (although I desperately wish she didn’t have to be in pain) or for my family, because there is still so much good in this life, in our life.

And because of this, I think I have a responsibility to focus on that good.

Humanity.

Hope.

Possibility.

Kindness

And

Choice.

When you say (and you feel) “My situation sucks, but my whole life doesn’t….”

There is power in that.

Logan taught me this.

She hates having cancer but cancer has never had her. She is gracious and graceful and she is hopeful and she is thankful and she at peace with it all.

It is why goodness always seems to flow towards her and as a result towards all of us as well.

Gratitude is not writing in your journal. You may have to start there and use it to keep you on track but gratitude is not about looking out at your life and saying a verbal thank you.

Gratitude is about looking inward and thanking yourself for being strong enough, aware enough and enlightened enough to recognize possibility and opportunities and good people and then use the energy you have inside you to create more goodness.

I post so many good things to the world simply because I want more goodness to flow into our life.

Not because cancer is a fucking breeze.

Not because I feel like an inspiration (I am always caught off guard when people say this to me. Do any of you know how much wine I drink?🍷😳😉) and not because every single day I don’t realize there is going to be another set back we have to face.

I do it intentionally.

I send out what I want more of.

I have come to learn that struggle is sacred and sometimes we have to face the really hard shit alone, and when we are strong enough to understand it only then can we release it out into the world and ask for support we need.

P.s. It will show up.

The same way all of you have somehow showed up and are now connected to our family and our story.

And if you have any doubt just look below at this beautiful smile and know…

 

Goodness happens despite the shit.

Every. Single. Day.

We are continuing to hang in there,

#rollwithit

❤️

J

 

 

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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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Half way

Today officially marks the half way point in Loggie’s chemotherapy protocol.

76 doses down. 76 doses to go.

I think today is supposed to feel like we’ve reached some sort of pinnacle and it is all down hill from here.

The truth is, however, it has felt like it has been ‘all down hill’ for so long that I have forgotten what it feels like to think going downhill could be a good thing.

The days just are what they are.

Each day is different.

Some days are ok. Some days might even border good (relative) and some days are just total shit.

I am sure Logan’s medical team think I am crazy, because on the ‘total shit’ days even I know I can be a complete lunatic.

There is no rational when your kid is sick.

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I call in to the hospital but my calls are always the same.

“Hi, Ummm, sooooo, this treatment is stupid…..It is totally not working and I hate it. Yes, I know I have to give it time but A. I want to know what your back up plan is because B. This is not good enough and C. You can’t expect us to accept this BS or do this on our own anymore (insert tears and hives). P.S. I want you to know am totally losing my shit”

There is always a long pause, and I am sure a slight eye roll at the other end of the phone but somewhere between those tears, and hives and my stuttering and shaking, and swearing somehow I am always talked off the ledge.

Or at the very least I am pacified enough to be reminded- the goal has always been to hit the half way mark of this chemotherapy protocol and then reassess.

So, now we’ve hit the goal.

We are officially at the half way mark (gold star?? victory lap??) and now I wonder what does that even mean?

I think it means we are at fork in the road.

Do we keep on traveling this path? Or do we take another direction?

Five weeks ago, I would have said with definite truth we would NOT continue doing this chemotherapy after we hit the half way mark.

Logan was not getting better, in fact, I believed wholeheartedly she was getting worse by the day.

No one disagreed with me, which only heightened my fear.

Every visit to the hospital I was encouraged to explore our options at Canuck Place. Our trusted therapist even suggested our sessions needed to shift as we prepared to accept the inevitable and as I wrote in my last blog, I felt like I was having nothing but hard conversations.

Especially with myself.

The start of Logan’s seizures have taken an incredible toll not only on her physically but on all of us mentally.

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Not going to lie, this latest blow has been torture.

And

Five weeks ago, I just felt like I couldn’t do any of ‘it’ anymore.

I had a breakdown.

A complete and utter, fall apart breakdown, and so did Brody, and so did Jared.

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For me, I couldn’t stop crying.

I must of cried a million tears.

It started in the parking lot of the hospital and I felt like a ton of bricks had been thrown at me.

I was shattered.

It was raining and Logan needed blood work done. There was no handicap parking spot and we needed to take the wheel chair across the parking lot in the slush, and snow and sleet.

I cried as I struggled in the freezing cold to pull that chair I loathe out of my car and stuff her in it. I cried as she had her tests done, watching them put a warm compress on her veins. I cried as I drove home through ridiculous traffic trying to calculate how many kilometres I’ve driven back and forth. And when I got home and finally got Logan settled back into her warm bed I cried as I returned to sit alone in my parked car just to be alone.

It was all too much.

Logan could hardly be moved out of bed. She could hardly eat anything. She was choking on her food, having difficulty with her breathing, and her walking was getting worse. She hardly engaged with any of us and I felt desperate.

Brody was also not his usual, sweet self. He was bitter and angry and nonstop back talking me and Jared was like a bomb with a lit fuse.

No matter what anyone said or did, he seemed like he was going to explode at any moment. Edgy, exhausted, angry, and so incredibly irritable. Honestly, he is usually pretty easy going but I couldn’t even look at him the wrong way and he’d snap at me.

Yep.

The inevitable collapse of The Lay family…..totally happened.

And all I could do was cry my way through it.

“Fuck this” I thought. “Fuck it.”

I didn’t know what to do or where to start.

So, I did what I always do and I started to write.

Not a blog. Not to all of you, but to myself.

I picked up my journal and I started to go back to basics.

How did I want to feel in all of this?

It took some time to figure that one out because obviously I don’t want any of this, but once I found a few words I started taking baby steps to explore what I needed to do and how I was going to get there.

Here is what I came up with.

“Tell Logan the truth. She is dying.”

Oh Fuck.

“Now, tell her how her dying is making everyone in the family feel”

Oh Fuck, Fuck, Fuck.

“Also, take Brody for some alone time and force him to talk to you”(Insert- know ahead of time you are going to feel like an even shittier mom 😩)

“And book a couples therapy session and get our therapist to tell Jared he needs to get his shit together, and maybe focus on what he can do instead of what he can’t ” (Not entirely what happened 😳)

But it was a start.

And so it went.

I called a family meeting.

I told Logan- straight up- I am pretty sure she was dying.

We all cried.

Like, really cried.

Like, actually fucking bawled our faces off.

Thinking about you all reading this I can almost feel judgement. You might think this approach is harsh, or not my right, or negative or like I was ripping away her hope, but I am her mother and I just knew at the very depths of my soul this was the right thing to do.

I had to be the one to tell her.

She needed to hear it. Hardcore. No fluff.

I could see her slipping away before my eyes and I feared she thought time was still on her side when the reality is, we all know it’s not.

She is going into autonomic system failure and the only thing that will help her now is hard work, moving her body, and pushing herself. We need to work against the clock. Buy time while this chemo does what it can.

Her cancer is only one part of her problem.

The doctors all agree unless we do something to help combat her blood pressure issues, the seizures will continue and other health problems will also manifest. Ultimately if we don’t retrain her brain and get her moving it may not be the cancer that she succumbs to. I just can’t bear to live with myself and let that happen.

But I also knew it wasn’t going be an easy task to get her moving.

It had been five months of her being stagnant and I needed to shock her into understanding her reality.

Extremely low BP, plus feeling like crap from chemo and low blood counts combined with the sadness and pity she felt around her would make pulling her out of this slump difficult.

This wasn’t going to be a dramatic turnaround. We all needed to be prepared but I also knew it was imperative we tried.

It was ‘go time’ as Jared put it.

Do something, or give up.

I knew I had to be harsh and push her or there wouldn’t be any quality of life (god I hate that term) in time she has left.

She asked me how long I thought she had to live.

I told her at the rate she was going I doubted she would make her 20th birthday. Her birthday is June 20th. It is supposed to be her champagne 🥂 celebration this year- go figure.

We cried some more.

Then, Jared, Brody and I each took a turn telling her how her dying was making us feel and how it would affect our lives.

Listening to Brody was the hardest. He basically just cried and begged her not to die. But being the kid he is, he also presented a work out regimen to help her get stronger (and an action plan for our doctors, and the new surgeon at VGH👊🏻👊🏻😉)

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It was in this moment, I could feel, we all had a shift.

Logan looked at Jared and I and through her tears she asked “What do I have to do to live?”

Then, she looked at Brody and said “ Don’t worry buddy, I am not ready to go yet. I will try and get stronger”

And so it started.

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The very next morning we mapped out a plan to get her up and get her moving and eating whole foods and we made this plan to work around our own realistic goals and terms.

Not going to lie, it has been the hardest, most draining 5 weeks of all of our lives.

And most days, everything has totally sucked

BUT,

We’ve kept at it and there is progress to report.

So much progress!!!!

Logan is now eating 3 meals a day by mouth. She is choosing her meals (always smoothies for breakfast) and I although I am so tired of cooking random shit, she is almost getting enough calories to remove the overnight feeds. Most days she gets only fluids and electrolytes through the tube.

She requires 3000mls of fluids a day to help her blood pressure. Ensuring it happens every day is a big task within itself.

Second, we started an exercise routine (otherwise known as the JJB home physio program) and each day two or three times we get her out walking, doing squats, and lunges and using her hand weights. Sometimes, just for fun, we have a dance party.

But, regardless of fun, rain or shine, we commit to the walking.

No excuses, it doesn’t matter if we are having a bad day or the weather sucks (which it always does 😩) we go.

When the walking first started she couldn’t even make it from the house to the first lamp post without needing her wheel chair.

The first time we tried to walk up a small incline she needed to sit down on the road twice. She was shaking and crying. Jared and I both had to hold her up.

Now, almost five weeks later, she can do the entire walk (over 1.5 km a day) without her wheel chair and she is now attempting lunges on the sidewalks.

Progress. Yes!

Huge progress considering just over a month ago I told her, and I completely believed, she wouldn’t live for another three.

Now, today, I feel like she could, maybe, just possibly, once again, see better days.

We still have so far to go…

But this is a start.

Most days start out the same. Her blood pressure in the morning vibrates somewhere between 50/40 and 70/50.

It is a two hour process to get her up and enough fluids into her and her meds leveled out so that she is stable enough to start pushing herself to exercise, walk and eat. It is a delicate balance of not pushing too hard while her body is preparing itself. Without enough time and support she can have a seizure and then our efforts for the day are sabotaged. There are times when we are all tired and we want to skip exercise but we do it any way.

The days she does have a seizure are exceptionally hard to stay positive and chemo days are the absolute worst to try and get through but some how we manage to push forward.

Logan is still tired all the time, but I can see she is also trying harder every day and this is what is motivating us all.

I see glimpses of the old Loggie and I feel alive and inspired and encouraged.

Brody is also doing better, he comes on every walk he can and when I hear him arguing with his sister about stupid shit, like who plays ‘that song’ I actually feel happy because there is just a little bit more normal these days in our lives, whatever that is.

The JayRod has taken up a new hobby of making industrial shelving and furniture and he’s also started selling them which is alleviating a bit of money stress. Sales in his industry are such a grind so this is a a win, win.

What I learned (when I listened) is part of the reason he’s so stressed has to do with the additional costs associated with Logan’s illness. He doesn’t want us to have to give up the ‘fun stuff’ we do (who does??🍻) so this new endeavor is giving us a few extra bucks and reducing some of the stress.

We both agree, now, more than ever, our 90 day plan of escape and cool experiences isn’t just ‘a nice to do’, it feels like a necessary part of the treatment regimen.

He’s also decided to join crossfit.

So, again win, win. Not only will I have a super hunky ripped hubby by summer, I think it will be good for his mental health.

Hopefully, fewer explosions all around.

And so it goes.

We continue to try our best- even when it sucks.

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The half way point is officially here.

It has been a grueling struggle to reach this milestone and we have literally been clawing every inch of the way but I am proud because we have not given up.

We refuse to give up.

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Instead, we are taking a time out.

To regroup.

To recover

and to restore.

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We decided to give our doctors some time to review Log’s progress and to discuss what they think moving forward. Maybe they will have new plan when we get back. Maybe this won’t be the half way mark of this chemo but the beginning of something new.

Who knows….. but either way, we as a family need another time out, and a break from all of this cancer crap.

So, we are enacting ‘The 90 day Reid Adkins Program’ and we getting the heck out of dodge. Period.

We are going back to Mexico after Loggie recovers from this dose of chemo (next week) and we are happy our oncologist agrees this is the best possible plan we could have.

She actually cried today when she saw Logan walk into her office without the wheelchair. She hugged super tight when I showed her the videos of Logan lunging and she told me how very proud she was of us all.

She also shared with me that since I haven’t been entirely honest with her about our plan to jet away at the half way point, Logan’s MRI would have to wait until the week we came back from holidays instead of next week before we go.

I got a bit squirrely, but she calmed me down.

“I don’t want you to spend your holiday analyzing pictures and test results. You do that enough” she said, “I want you to have a few cold margaritas, sit in the sun and be with your family. Look at your daughter, she is the only perspective you need right now”

Of course, I cried. (Again)

God, we’ve come along way in our relationship.  I pretty much love her more than life and think she’s totally rad. (This week anyhow 😜)

We are also bringing someone to help us on our trip so we don’t have to juggle everything all on our own and we can come back feeling like we’ve had an actual break.

YES, again…progress. BOOYA!

I am learning I don’t have to do it all on my own to be a really good mom. There are no awards for overachieving and running myself into the ground. (Who knew?)

Auntie Betty has agreed to fly down at the half way point of the vacation so Jared and Brody and I can spend some time together surfing, and maybe doing some yoga.

Loggie is thrilled. Our last trip was great but she said she always feels like she holding us back from enjoying our favorite things.

The truth is…. she is right.

Cancer does hold you back, and it sucks, but cancer also pushes you, expands you, and at times, it also leaves you needing nothing more than a solid, super indulgent, and super fun, release.

We chose perfect words for this year so we might as well live them, I guess.

Adios team,

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Hard conversations

I find that when I don’t write for a long time, it is because I am in my head.

Generally speaking, I always think too much.

I start a blog and then I reflect…..

“Nope, I don’t want to sound so negative”- Delete.

My hands hit the keyboard again…..

“Nope, now I sound way too Polly-Anna positive and disingenuous”- Delete.

Truth is, I have a really hard time writing when it comes from a place of what I think people want to hear instead of what I know needs to shared.

As the ol’ adage goes ‘the truth that will set you free’ right?

So, here goes nothing.😉

We are entering the sixth month since Logan has been re-diagnosed and for almost half a year now, our world, has been turned upside down and rocked by this new (and so damn old) reality.

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There are good days and there are bad days but most of the time the bad days outweigh the good. We’ve struggled to stay positive and hopeful and patient but as the months have ticked by we are finding it harder to do so.

I haven’t written because words are hard to find and they are even harder to say.

The latest setback of Logan’s seizures have really messed us up emotionally. For anyone who has encountered, or lived through seizures, you know how terrifying they are and how suddenly your life feels like you are perched on the edge of a cliff.

Panic.

Anxiety.

Loss of control.

Fear.

Unsettledness.

Worry.

This is cancer. And it sucks.

As much as I would like post blogs making it all look as easy and inspiring as Lance Armstrong did, we are not machines, we are real people who are haggard and run down. This is the fourth time our child has undergone cancer treatment and this time is SO (emphasized ten million times) much harder.

Emotionally.

Physically.

Spiritually.

Not only are Jared and I exhausted from the almost 12 years of caring for, planning around and worrying about someone with cancer, Logan is so tired too. Mentally, yes, but her body is also tired like I have never seen her before.

She doesn’t have the ability to just pull herself together (even for the fun stuff) and although she wants nothing more than to feel better, most days she just can’t.

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I can count the number of good days (good days meaning awake and engaged/ all relative) since relapse on one hand, and even though we are doing our best to make each day count, the truth is sometimes the quest to do so is a struggle in itself.

We want so desperately for every moment to be the best they can be.

We worry about running out of time (but are NOT giving up hope). We are yearning to cross off each and every fun item on our proverbial bucket list.

One would think, it would be what you do if faced with possible death. I mean, who wouldn’t want to cross the finish line of life with an array of gold stars for living life to the fullest?

But, honestly I am learning this ‘idea’ just isn’t the way it is in reality.

You take each day as it comes.

You are forced to pick out the good moments and you try not to fall victim to the day’s allotment of shitty circumstances. You move the goal post and hit the pause button. You let go of expectation.

Logan is happiest when she’s snuggled into her bed. Period.

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She loves it when the world is quiet and she has the ones she loves most beside her. She likes clean sheet day and fresh jammies. It makes her happy when one of us lies with her and watches T.V. She likes a back rub or having what little hair she has left blown dry. Most nights she tries to get me to sleep with her.

She likes to giggle and laugh while we look at our phones. She thinks the filters on snapchat are fun and she enjoys gossiping about the world around her, but she has little interest in participating in it right now.

Chemo is taking its toll, no doubt.

We are in the thick of it.

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This cycle has been delayed because her ‘counts’ are just too low to hit her again. We are checking every couple days (and secretly hoping) that the doctors pull the trigger and start blood transfusions. There are pros and cons to doing so. We know giving blood is not a magical cure but somehow it would just feel nice to have a plan in place to help boost her up instead of knock her down all the time.

I am starting to wonder if I am pushing her too hard.

I am starting to wonder if I am pushing all of us too hard.

My therapist thinks I need to do work on accepting what ‘is’ instead of focusing on what ‘could have been’ or what ‘may be’.

I know she thinks I don’t ‘get’ where we are at.

Maybe it is because I try to avoid the conversation at all cost. Maybe it is because when she talks about the possibility of Logan dying, or spending more time at Canuck Place, I talk about the possibility of a POG study or Dr. Toyota using his laser or trying a different more aggressive form of chemotherapy.

Maybe, somewhere on her list of psychological red flags she thinks I am in denial.

But, despite any assumption, I do…..

I fucking ‘GET’ it.😩

Trust me, just because I am not inconsolably breaking down or picking out songs for Logan’s celebration of life doesn’t mean I don’t ‘get it’. I know where we are at.

I live it.

Every. Single. Day.

But instead of succombing to what is in front of me, I am choosing.

Every single f’ing day I wake up and I look at myself in the mirror and I tell myself to get a grip.

I tell myself that all I have is this day.

This one.

I tell my self that even though my life and these circumstances are out of my hands and I feel like I have zero control

I DO!!

I have control over my own thoughts and everyday I tell myself I am not going to let myself go crazy.

I am losing so much, but I am not going to lose myself as well. I am not.

I ‘get’ how people might think I am bananas when I talk about our next family trip to Mexico or our 90 day plan, or selling our house to move to the Okanagan or when Logan goes back to work, so she can start paying some of her own darn bills.

Trust me, I hear myself and I know at this point it sounds far fetched to you, but it doesn’t mean I don’t ‘get’ it.

They, (doctors, nurses, therapists, pharmacists, the Canuck Place people, and everyone else on our healing team) suggest our life is now about ‘living in the moment.’

These words are really starting to bug me.

Almost as much as ‘You just have to be positive and quality of life’.

If you ask me, these statements are pretty loosely thrown around.

Easy to say and sound like perfect words to use, in theory, but in reality, almost impossible to practice.

I am starting wonder if these words are just part of protocol. If healthcare providers are instructed and trained to insert certain lingo at different stages of treatment? How can it be possible they all have the same language?

I, can however, read between the lines.

They think I need to start having ‘THE HARD CONVERSATIONS’.

They think maybe I am living in a bit of a fantasyland, that maybe there is a disconnect and we think Logan will be able to go back to her ‘normal’ self again.

The hopeful conversations that ‘they’ used to have to inspire us are now conversations they fear having just incase our perceived denial is worse than they think.

I can feel the shift in our meetings. Every single person is starting to lean into the hard conversations with us. Even when they try to be soft about it.

Our talks usually now start with a weird pause, drooped shoulder, tilted head and long deep breathe before the words, “Sooooooo, how are things?” Or “I am soooooo sorry to tell you….”

I let them go through the process, because I also ‘get’ this can’t be easy for them either.

But truth is, what ‘they’ don’t realize (despite all their experience and training) is that ALL I do is have the hard fucking conversations.

All. Day. Long.

I have them with myself, with other doctors, with strangers and with friends. I have hard conversations with benefits providers, pharmacists, Logan’s pals, other cancer moms, and my favorite nurse (poor thing, she gets all the recaps) 😘

There are hard conversations with people in my life that just ‘don’t get it’ and never will…and then there are the conversations where I don’t have to say a word and there is just space and compassion making words even harder to say.

I have hard conversations about the why’s? the when’s and the how’s? About the possibility of things getting worse, and about windows of opportunity when things might get better.

I have hard conversations about ethics. How far does one go to save someone’s life?

I have hard conversations with my husband who is feeling trapped at work and in this life. The fear around money and the financial burden of this resting solely on his shoulders. The repercussion of giving up an opportunity for fresh start and a new career hindered by this cancer the fact he can’t fix any of it. All he wants to do is provide the very best for us and he feels like he’s failing. Every. Where. He. Turns.

I have hard conversations all the time with Brody who just wants freedom and fun and is so damn tired of always being stuck at home.

I have hard conversations with long time friends who are now afraid to share their own lives upsets and feelings with me because in their words “It is nothing compared to what you are going through.” (P.S. NOPE it is not- and thank God for that- but life is not a comparison or a competition. Please indulge me with your normal stress’ I really need it.)

I have hard conversations with people who I refuse to even engage in conversation with.

But the hardest conversations I have are always with Logan.

Yes, we talk about the possibility of her dying.

How can we not?

This fear is always right there on the surface behind every headache or weakness, or now, the worry of every seizure. We think about it as we channel our energy hoping for the cure with every dose of chemo. Thoughts around it linger every night as another day ends and we wonder how many we have left.

Logan doesn’t want to die. Period.

She has told me she isn’t ready and still has so much living she wants to do but she also fears what life looks like the way she is now. She fears being a burden for the rest of her life.

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We tell her she isn’t a burden, but she sees us struggle and feels the fear we have (but don’t say) about this being our permanent reality.

Logan isn’t much for talking about her feelings so when she opens up, those are the REALLY hard conversations.

I am used to speaking for her. Most of the time she asks me be her voice for everything. She trusts and expects me to step in and advocate for her. She has a very hard time getting her thoughts from her brain to her mouth, so, most of the time, even if she wants to or needs to; she just says nothing at all.

She keeps a lot of feelings bottled up for fear of judgment or misunderstanding.

Listening to her struggle to articulate how bad she feels for things she can’t control or hearing her fears and sadness, knowing there is nothing I can say or do to make it better is heart wrenching.

Conversations between us where the tears outweigh the words are some of hardest conversations I’ve ever had.

Logan is strong, her spirit and her will to survive is fierce despite her bodies fragility. She doesn’t want to give up. She is not ready and she is very clear in that.

We have the hard conversations but we are doing our best not live in them every single day.

We ‘get’ it.

This is NOT over our heads.

And just because you see us smiling or joking, or propping her up in a wheel chair at a hockey game, or lugging her around the mall to buy new outfits for our next holiday doesn’t mean we are in denial of where we are at.

It means that despite not having one single say in any of this, despite feeling trapped and ripped off and scared as hell, we do have choice.

We have a FUCKING choice- (hear me universe???) and as a family we are choosing how we going to face Loggie’s cancer and how much power we are going to give it.

We are CHOOSING to find pockets of goodness and fun. We are CHOOSING not to let it break us. We are CHOOSING to continue to make plans, to book holidays, to renovate our house and to freshen up our space and move forward. We are CHOOSING to laugh instead of cry, who we want to surround ourselves with, what feels good and we most of all we are CHOOSING how we need to be supported during this very messy time.

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At this point, all we have is choice so guess what?? We are grabbing it by the balls.😜

None of us—have a choice in when we die, but we ALL have a choice in how we live.

This life, our life, and this fourth fucking time facing cancer, can piss off, take a hike or at least know it’s place.

This is strictly on our terms. Period.

It is Logan’s terms and however she wants to rock out her time here, is how we as a family will roll with it.

So, screw the hard conversations. They aren’t hard.

They are just, simply, necessary.

I learned a new word this week- learned, as in felt (I am starting to think that feeling is only way to learning?).

Embrace.

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I’ve added it to our motto.

#Embrace. #rollwithit

So, screw the hard conversations, for right now. We are far too busy trying to live life right now to dwell on them. ❤️

 

 

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It will be OK…….????

I started writing this blog three times.

The first time it was about Brody. He deserves a blog and I have so much I want to share about him. It is something that will be written but I’ve had to pause from the words I wanted to say about my boy because Logan’s health has declined and that comes first.

Her decline made me spiral into devastation and worry and turmoil and my second attempt at this blog started by writing about the beginning of the end.

Then, those words were also halted when yesterday she decided to get out of bed, watch the Super Bowl, eat on her own and do some online shopping. Now here I sit again feeling completely uncertain of where my thoughts are, teetering somewhere between hope and fear (as always I suppose).

I am finding it hard to catch my breath these days.

There is this a nagging, constant heaviness and pressure on my chest making it difficult to take even one deep inhale.

I am trying so hard to keep it all together but caring for Logan has become so much more demanding.

Both Jared and I are physically drained from the obvious tasks, but emotionally I feel like the dramatic swings from possibility to devastation are also taking a toll.

Inside of me everything feels so intense, rigid and tight.

I can’t ever seem to relax my shoulders, or release my breath. My jaw feels clenched and I have this constant dull and nagging headache that won’t go away.

My body feels foreign, almost mechanical and robotic, as I move though my day yet everything around me feels flimsy, fragile and about to fall apart.

It takes everything out of me not to lose control, or scream at the top of my lungs and cry. At times I can’t sit still and then just as suddenly, other times I can not move.

I am paralyzed and frozen from the heavy weighted fear that is resting directly on my heart.

The pressure around me feels like it is about to explode. It is unbearable.

Worry and helplessness and panic and losing hope is like a pot of water boiling over with no switch to turn off the heat.

I am doing whatever I can to stay positive and in the moment. I am trying to channel whatever hope and love and f’ing optimism I can because I know…..

The only thing scarier than what is in front of me, is the possibility of a life without her.

But how can we go on like this?

Things are getting worse (or at least they are not getting any better.)

I have a hard time even writing words of dwindling hope because they feel like I am giving up.

I am not.

Logan is not. She is still so kind and sweet and accommodating. I know she feels terrible that she can’t do any better than she is and that is hard for me as her mom.

I want her to know she is always enough.

But, I am starting to understand this disease in a new light and cancer doesn’t give much space for what you want, and it also doesn’t give a shit at how hard you are trying.

Instead it insists. It jolts you, slaps you upside the head and it forces you to face what is right in front of you no matter how hard that is.

There are no points for being stoic but I’ve learned you also are not diminished for faltering courage.

There are good days and there are bad days. Sometimes, the truth is the bad days outweigh the good ones (even when your kids get to do amazing stuff like being stage with the Canucks).

Joy and struggle can coexist.

The fear of saving Logan while watching her suffer and the fear of losing her while contemplating a life without her become equally as scary.

There are times when don’t know what to wish for and the free space in your head to think about it all just messes with you.

Logan is not well.

Yes, she looked great at the gala (pictures will do that) and she really did rally very hard to watch her brother give his speech, but she also paid dearly for that night out.

Another shitty thing about cancer….

It keeps a tally.

When you spend all your energy in one place it seems to punish you. You can’t bounce back or replenish quickly.

Two days after the event Logan had a seizure.

Luckily I caught her.

Thank god for Jared.

He caught us both.

I don’t say enough about the JayRod. Really, he is the most committed and remarkable father ever.

He never leaves any of us.

He always seems to be there when we need him and he is unwavering in the commitment he made as a husband and father.

As I screamed in horror, and tried to engage with my sweet girl by calling her name, Jared gently laid her down on the carpet and rubbed my arm.

“It’s ok honey….she will be ok”

I sobbed.

Logan’s eyes twitched and her hands shook. She laid on the floor stiff as a board.

Jared remained so incredibly calm and when Logan finally came to, he smiled at her the same way he did at me, rubbing her arm and saying

“It’s ok honey….you will be ok”

Logan slept the rest of the day.

She had one more small episode on Saturday morning and then felt terrible all day. Sick, shaky and so tired we couldn’t even understand what she was telling us when she spoke.

Jared took my hand.

“I have to be honest. Honey, today is the first time I can honestly say I am NOT sure if it will be ok”

I spoke with our oncologist and based on Logan’s exam and symptoms she also believes Logan is likely having seizures.

Combine this with the blood pressure drops, chemo, low blood counts and the tumour and it’s hard to distinguish what the hell is going on and when..😩

The plan is likely going to be to start a new seizure medication this week.
We have, however, decided to wait on the EEG which will happen in the next couple of days before we decide which one to give her.

Loggie is on so many medications and we want to be sure this wasn’t just an isolated event before we load her full of more pills.

I’ve spent the whole weekend in turmoil.

Thank god for the snow days because to be honest, I couldn’t imagine facing the real world.

I keep asking myself what I am really trying to do for her? Is this chemo going to help her? (God I am begging)

Is there anything I am missing?
Is this fair to her? Am I being too hard on her? Or too weak?
Is this what the rest of her life is going to look like, pain and sickness and struggle?
How long is the rest of her life going to be? Why? Why? Why?
How are we going to find the strength we need to get through this and come out stronger? Is it really possible?

Sadly, at this point, I have learned the only answer I have is-

I don’t know.

I can’t possibly know.

But we must trudge forward anyhow ❤️

 

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The (wine) glass is always half full

 

It’s all in the way we look at things….

It is true, we all have a choice.

Optimism or pessimism?

Is the glass half full or is it half empty?

Today, I am trying to SO damn hard to be an optimist.

Last night, I felt like a crumpled mess of disappointment and negativity and a total pessimist.

Deflated.
Angry
‘F’ this’
Sad

MRI day has always been such a tough day- this one was exceptionally hard.

We needed a win.

But instead what we got was more of the same.

Life is like that, you don’t always get what you want and it always comes down to you to decide how it’s going to be.

(Life all over the map lesson)
Your own perspective is always your own reality.

The MRI results show no change from Oct 26.

Sigh 😔

On hand this is great news, right?
Stable-
Status quo-
Not worse-

But on the another it is….well….just shitty.
Not better
No improvement
Questionable response
A whole bunch of signal enhanced abnormalities still lighting up the scan.

But the scan is only a picture.

We also have to take into consideration how the patient is doing.

Logan had a full neurological exam done yesterday.

It’s been about 6 weeks since we’ve last seen her oncologist.

The result- also a question mark?

Some things have deteriorated.

She has less reflexes in her feet and ankles. She has tremors in her hands and there has been a decline in her dexterity and fine motor skills. She gasps more frequently for air, her voice is softer and she has less movement in her tongue.
She is also having a bit of trouble with bladder sensation.

So that all sucks.

Top those symptoms off with a scan that doesn’t look any better, a kid that is tired all the time, who is still not eating and drinking enough to sustain herself, and it’s easy to spiral into a really dark place and think only the worst.

We were told this chemo was our best chance of shrinkage and improvement.

We were told we’d hope to see some of these improvements in about 3 months time.

We have clung on to those words for dear life.
Yesterday, we felt desperate for good news and today, here we are.

No further ahead, no further behind. Stagnant is starting to feel very stifling.

We want better than this.

We NEED better because we don’t have a tickle trunk full of possibility and cutting edge treatment just waiting to be tried.

The truth is we don’t have many cards left to play.

No more radiation, a huge question mark around surgery (last resort, huge risks and possibly no better results) and not many other chemo options- maybe none better than this. Yes, we’ve tried naturopathic treatments (and are using a few now). We’ve had healers here, done reiki, made her eat dried roots, and handfuls of supplements. Shes taken classes on mindfulness and visualization and we’ve thrown caution to the wind and lived in the moment. We’ve given back, raised shit loads of money for research and tried our best to do everything right.

So, yes, damn it- we want more

But that is not how this works.

There is no tally sheet because of what you’ve done right. Cancer doesn’t work that way and it is hard to accept having things out of your control.

 
It is hard when you don’t get the great, promising news you long for. It is hard not having a miracle to share (yet).

BUT

This is where we are at.

So, in the spirit of never giving up and being optimistic and drinking from a (wine) glass that is always more than half full (#truth) 😉🍷

It’s not all bad either

Maybe, this is just what progress looks like for us right now.

A pause.

In tumour growth
In time
A pause to strengthen, to heal, to accept and to just be- in these moments, together.

All good thing come to those who wait….

Isn’t that how the saying goes?

The scan is not worse- so maybe chemo has stopped the growth. Maybe it will just take some more time for it to regress. Maybe that will happen as Logan gets stronger. Maybe this chemo will take longer because it is not such a shock to Loggie’s system.
(God only knows her counts have been better than expected.)

Maybe things will only get better from here?

Yes, we could give up.

Switch to another chemotherapy or try a different regimen but we’ve decided not to, just yet.

Our oncologist is remaining hopeful about this one so that means we are too.

We are focusing on baby steps.

There have been some small improvements.

Her blood pressure isn’t terrible all the time and she seems to be responding to the BP medication better.
Her swallowing has improved.
She’s walking more on her own without the wheelchair and her nutrition is better. She has finally started to eat a bit by mouth (2 days ago she ate enough not to use the tube).

And so it has been decided to hold steady.

To be patient and to trudge forward and carry on with this chemotherapy, for the time being.

The plan is to see her oncologist more often for neurological assessments. Likely, every couple weeks.

If things get worse, we will adjust some of the doses of her chemo to see if any of her deterioration could be side effects from treatment. If that doesn’t work, then we will stop this treatment and come up with a plan B.

The current goal- 2 more cycles of this chemo and then another MRI in April to reassess.

The current hope- we are making the right decision.

She’s had 4 doses of round 3 chemo since last night. She has 13 more to go over the weekend.

Let’s pray….

Third time’s a charm ❤️❤️

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Do your best (even if it sucks)

It was bound to happen….

The crash.

I could feel it coming on, festering just below the surface.

Anxiety is like that.

Choking.
Smothering.
Pressing.

You swallow it down, trying to avoid it. Thinking if you treat it like a spoiled child and  don’t give it any attention sooner or later it will stop being so disruptive, right?

Then, one day you find yourself in your therapists office unexpectedly gasping for air.

Puking.
Bawling.
Collapsing.
Shaking.

Crumpled up on her sofa, uncontrollable.

Where did this come from?

You try to make sense of what is really happening…
Is this what the result of denial feels like?

I thought Mexico might help stop the meltdown from coming. I felt emotional and shaky for weeks…

Maybe, I was just over tired and needed some sunshine. Maybe all I needed was to get away, run away from reality and have a change of scenery and a few margaritas?

No matter how bad things are, they are always better in Mexico….right? (Yes they are 😉☀️)

 

But the thing is, Mexico is only temporary.
Mexico isn’t reality, and coming home after escaping reality for a few days has made the return to the norm exceptionally tough.

It is MRI week, so that doesn’t help.

Ugh.

The first MRI since Logan’s relapse and I’ve got scanxiety like I’ve never had it before. It feels like EVERYTHING, her whole life and our whole world is riding on the pictures we are about to see.

Is the chemo helping? Will we have to change course? Is there a back up plan?
Will there be an improvement?

I don’t know-

And thinking about it all, trying not to get too far ahead, and keep my emotions in check, is so incredibly fucking hard.

I want to scream. I want to beg, I want to run yet I feel paralyzed inside- out of control, yet motionless and helpless.

It is out of my hands and it will be what it will be. I know in theory I have to accept what ‘is’ but inside I am fighting it- all of it.

This can’t be the truth…Our life?  It’s not possible…I hate this.
I want us to have freedom from cancer but I’m scared to ask for freedom incase what we get is not the freedom I long for.

I don’t know what to wish for.

What to ask for?

How to be ok?
Pictures don’t do justice for how Log is really doing each day.

She looks amazing in photos and has this incredible ability to light up the camera but a picture is just a moment in time.

There have been improvements, I think?

I seem to ask everyone what they think too.
The answer is always iffy. Maybe in some ways she is better? But maybe just doesn’t seem good enough…

Overall, I know.

She is just so tired-

All the time.

95% of all her nutrition and fluids are still going through the tube- she’s still not eating or drinking anywhere near enough to sustain herself and when we check her blood pressure because she’s complaining of symptoms, the numbers we see are terrifying.

There are times when I hear her gasp for air or I see her shaky little hand having difficulty opening something, or she’s off balance, or slurs her words and I feel sheer terror because I know some of her symptoms are indeed worse.

I feel the panic- the restlessness- my mouth feels dry, my heart skips a beat. I am jittery and I can feel it creeping in to me.

The fear.

I try my best to pull myself together and avoid the complete spiral off the deep end.
Thank god I still have the strength to control that.

I clean.
I organize
And I try to keep busy, making plans, making food, making a mess so I can clean it up.
Moving, for me is imperative.

When I stop there is only time for thinking….

and thinking is just too hard.
I tell myself-

“Don’t go there.
The chemo is working.
What you are seeing is inflammation from the destruction of tumour. The symptoms would be the same….
Don’t go there, Jenny….
It’s too scary….

You can’t afford to fall apart.
Stay strong for Brody, Jared, Logan. Think positive.

Do your best (even if it sucks)
DON’T fall apart. DON’T cry. DON’T start worrying, panicking or letting the bad thoughts in.
They are only thoughts. Not facts.
Wait for the facts.
Make a solid plan-
Keep moving”

And so it goes.

Then, there is the flood of guilt. Such a useless emotion- but it’s also always lurking, right behind the fear, in front of the sadness.

“I wish I was more grateful for the time Logan was stable. Why didn’t I let it all be good enough? Why did I have to feel so angry for the challenges Logan faced over the past few years when I could have just accepted things for what they were?”

The tears flow

“I wish I would have enjoyed those stable years more.
Maybe I shouldn’t have pushed her so hard. Been so strict- or tried so hard to think that her life could be normal?
I promise if we get another chance I will do better….”

**** And just like that I am forced to pause from writing because Loggie starts puking 😩and I’m pulled back into the moment****

I guess it is a message from the universe-jolting me back.

I get it.

“Stay present, Jenny.
Rub Loggie’s back.
Check the tube.
Call the hospital.
Arrange her meds for the day (add extra anti-nausea)
Get Logan’s pre chemo blood work done.
Check her blood pressure
Do a bolus
Throw in a load of laundry,
Vacuum upstairs
Change the sheets.
Check the order of feed bags that arrived
Clean last nights feed bag
Call special authority about meds not covered. WTF?
Get the wheelchair receipt
Contact benefits
Make sure chemo is ready for pick up.
Eat.
Shave your legs
Breathe.
Breathe deeper.
Keep moving.
Do tangible things.
Stay strong.
Think of something fun to do today.
Don’t fall apart, Jenny-
Under no circumstances can you fall apart.
Keep your shit together.
Find a new tenant for our rental property??(SHIT not this now😩)
Smile.
Remember, people are rooting for your family
They think you got this–believe them damnit!
One more deep breath….”

And so it goes–

Up and down like a yoyo it is a rollercoaster ride.
The reality that every single person/family who lives with cancer knows- every day is different and life, emotion, and your own bloody sanity can truly be all over the map.
MRI and round 3 of chemo starts tomorrow.

2017  is only 17 days in and it already feels like it has been a long year.

Can we go back to Mexico now  🇲🇽 🌴☀️🍹?

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