Enough

As I sit here and reflect on 2017 to write, think and ponder, all that comes up is uncertainty and anxiety.

This year is winding down and another one is yet to begin. I am thankful we made it through 2017 (If even only by the skin of our teeth. 😳)

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I can remember sitting here one year ago unclear if we would still be a family of four and see 2018 together.

I am sad and grateful for this year.

It is not lost on me how I lucky and unlucky I am to feel exactly the same way 365 days later.

As I sit here with my Desire Map Planner trying to fester up my intentions for 2018 my thoughts are racing with the hope and possibility.

I almost always feel this way with the prospect of a clean slate.

Only this time it is different.

The wishes only swirl inside my head but truthfully, I don’t really ‘feel’ them.

In theory, optimism on New Years seems logical and expected, every one does it.

But this year, when it comes to writing down and committing to owning my own core desires- my pages are completely blank.

“How do you want to feel in 2018?”
The first question on page one baffles me.

I know I am screwed.

“Not like this any fucking more.” Is the only thought I can come up with.

I put the book down.

“What is the point?” I mumble to myself. I pour myself a glass of wine and pick up my latest read- ‘The subtle art of not giving a fuck.’

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It seems fitting.

Maybe my only option is not giving a fuck.

But is it possible?

‘They’ say anxiety is living in fear of the future
And
‘They’ say depression is living in sadness of the past.

‘They’ also say the only true path to happiness and peace is to stay in the present moment.

I ponder.

“Who the F are ‘they’ anyway? and how the heck do ‘they’ even know? Have ‘they’ ever lived a life as messed up as this?”

Fuck them or ‘they’ or whomever 😉

I am so condescending and judgy these days.

I know it is because I am struggling.

This past month has been an absolutely incredible and an overwhelming show of love and support towards our family.

We have experienced some of the most amazing acts of kindness in our entire lives. So many of you have turned up to rally for us. We’ve been in awe. ❤️

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What you’ve given us is far more than freedom from a financial burden.

You’ve shown us you are with us. We know we aren’t alone and that you all are committed to helping us get through this difficult time.

You’ve given us comfort, love, warm meals and oh so many hugs.
You’ve shared advice, hope, and faith in humanity and community and god.

We have spent so much time in absolute shock, we’ve almost been unable to process the level of kindness and compassion we’ve been shown.

It’s hard to imagine we are even worthy of all of the this.
We, never in a million years would have expected what you’ve all done for us and I am at a loss on how to even begin to thank you all or how to show you how grateful we are.

I feel like I am never, ever, going to be able to repay this level of kindness forward in my life although it is all I want to do now.

For me personally, I feel like you have all given me so much more than you will ever know.

I know I needed to learn this level of humility and I needed to know what it feels like to be this humbled.

I have always been someone who has struggled with receiving (I like to think I don’t need help) and I’ve also struggled with control (I might not have it all covered😉)

There is a false sense of accomplishment that comes with feeling like things are taken care of. I yearn to have a plan. I like taking action. I like feeling useful, doing something, anything….

But this year has been so out of control that every time we took two steps forward and felt like we were making progress,it was as though we were pushed twenty steps back. It was a constant shuffle and we had no choice but to own it.

It’s been a tough year.

Truthfully, it’s been the worst year of our lives- and yet it has also been filled with some of the best experiences, the most kindness, support and generosity we’ve ever experienced so it’s hard to chop it all up to a bad year.

This is where the swing of the pendulum of my emotion comes into play.

The contradiction of life that is hard to process. How can it be so awful and yet so amazing all at the same time?

I just don’t know what to do…or how I am supposed to feel coming into 2018.

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I try so hard to only lean into gratitude and think about enjoying this time we have together.
I desperately try to stay in the now- I don’t want the anxiety or the depression- but I just don’t always have the strength to steady myself.

I slip.

I think about the worst. I get so fucking angry. I am tired. I feel ripped off and the ‘what if’s’ fill my thoughts all day long.

What if this is our last Christmas as a family? What if things don’t work out? What if our life will never be ok again? What if we can’t find the strength to rally anymore?

What if Logan isn’t strong enough to take anymore treatment? What if her health stabilizes and we get more time together but this is as good as it gets?

How do I accept what feels so unacceptable? How do I not become bitter or jaded?

Where does the ever lovin’ strength that every talks about come from? Because I fear it’s not a renewable energy.

We are all so drained and sometimes all I want to do is go ape shit crazy and lose my mind.

Riding the ups and downs of uncertainty is emotional and exhausting.

But staying up all night to listen for Logan throwing up or worrying about her getting out of bed alone when her blood pressure is unstable is physically exhausting and starting to take its toll.

Caregiving 24 hours a day, listening to her feeding pump run for hours on end, the endless phone alarms ringing indicating it’s time for more medication, the error codes on the blood pressure machine beeping and the cries of sadness and pain have become the rhythm and sound track of our lives.

It’s not good enough.

Yet, what if this is all we get?

What if this HAS to be good E-fucking-Nuff?

How do you measure joy and happiness amidst all the fear and worry?

How do you allow yourself to experience both the pleasure and the pain this illness has brought to our lives?

Guilt is thick. It plagues me. I am vulnerable to people who judge me because I know I am not perfect and I am always judging myself.

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“Could I do a better job? What else should I be doing? How can I fix this mess?”

I believe the acupuncture and new medication regimen have finally helped settled Logan’s endless vomiting (thank god) and this relief has given us some respite.

For 9 weeks Logan vomited at least 10 times a day. She quickly lost about 12 lbs and it didn’t matter what we did, she was in a cycle and we just couldn’t get her out of it.

I felt the anxiety and desperation and helplessness like I’ve never felt before.

I feared we had little time left. The doctors didn’t know why this was happening. Maybe the chemo was too hard on her, maybe the tumour was progressing, maybe it was a fungus….
We spent days on end in the hospital and there were no answers.

But as of today, it’s been 9 days and she’s only vomited once. (Knock on wood). It’s not all roses. Don’t get me wrong- but we are now managing symptoms and it feels a little more hopeful.

The doctors are confident their new ‘think outside of the box’ concoction of 7 zillion meds are the saving grace.

The acupuncturist is convinced her improvement is because he has finally managed to open some of her energy blocks and her chi is finally starting to return.

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I don’t know. All I know is I should be grateful and happy for this little bit of respite but all I feel is an overwhelming sense of dread for the unknown.

Logan is weaker than she’s ever been. Fragile- shaky and frail. Think 90 year old grandma.
She’s confused. She has trouble articulating herself or getting her thoughts together. She moves so slowly it is often just easier to put her in a wheelchair and trying to get her to eat a full meal is a constant struggle.

The doctors tell us best case scenario we need to continue to give her a break from chemo for as long as possible. We will have another MRI in the coming weeks to look at the tumour and make sure it isn’t growing.

The hope with this ‘wait and see’ strategy is that she gets physically stronger and her organs and bone marrow recover enough to possibly take more treatment if needed.

The shitty thing is, even if the tumour doesn’t grow for a while, obviously after 4 relapses we know it will, it’s just a matter of when.

It feels like living on the edge of a cliff and praying the earth doesn’t give way.

Regardless of growth, the size the tumour and location of it now is our biggest problem. We hoped after 14 months of chemo we’d see better results from treatment.

Sadly we just didn’t.

The brainstem is where her tumour is and absolutely controls everything and even if the tumour doesn’t get any bigger for a few months unless we do something to minimize it, this is likely the Loggie we are left with.

She is in autonomic system failure. For those of you who don’t know, your autonomic system controls the basic system you need to live. Breathing, heart rate, blood pressure, swallowing, digestion, organ function, metabolism, waste control- all of it.

All of it.
Her whole system is not working properly because there is a stupid tumour in the way and as the doctors say “it is wreaking havoc” on her system.

The shitty part is that the more chemo we give her the more we are hurting her whole body and even though it’s been helping the cancer (there are some areas that look improved) we aren’t sure how much more poison she can actually withstand.

So, as I sit here and think about coming into a new year, I don’t know what write in my planner, because quite simply, I don’t know what to hope for.

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I don’t know how to accept where we are at. I don’t know how to pause, and enjoy this time together when it’s so much to manage every day and the fear of the unknown is bogging me down.

I don’t know how to process.

It’s like there is a glitch in the software controlling our existence.

I feel like all we’ve worked to achieve in this life doesn’t really matter anymore.

Things we’ve prided ourselves at attaining feel empty.

Being present and in the moment feels imperative but I am grasping.

I don’t want to miss anything, not the absolute goodness or any of the bad moments.

I feel desperate to accept where we are at but I am finding it so fucking hard to do when all I feel like I am doing is sitting around waiting for the next shoe to drop.

All I want is for these moments to be enough. Enough for now. Enough for the rest of my life, if it has to be.

We, as humans, are programmed to believe the opposite of lack in our lives is total abundance and none of us want to live in lack of anything.

We all strive for abundance.
It is drilled into us that if we can believe wholeheartedly in something we can manifest all the beautiful things we want to receive.

I call bullshit.

We all want wealth and success and health and unlimited happiness. We are programmed to believe that when we finally ‘arrive’ at our perceived level of abundance and achieve all of our desires only then we will finally be happy and content.

But what if the opposite of lack is not abundance but only ‘enough’?

What if we can’t actually ever reach happy and content and abundance unless we can accept where we are at every stage of our lives as simply ‘enough’?

What if we stopped wishing for more and started focusing on what is?

I listened to a podcast a few months ago and this concept has been swirling in my consciousness since then.

I have been back and forth internally struggling to find a way to accept where we are as enough.

Don’t get me wrong, I am not there yet….but I really want to be.

I want us to enjoy (whatever that means) these moments even if they don’t measure up to what we hoped for in abundance.

I want to lap up all the contradiction and just live from a place of less pressure and more of what feels good.

I want to let go of trying to fix it all.
I want to do the best I can but not miss what’s in front of me because I am wishing for more than is currently possible.

There is only one problem, I just don’t know how ‘get there’

Yet.

Maybe I never will.

Or maybe 2018 will totally rock.

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The thing is, I think, maybe as we all sit and contemplate this new year instead of plaguing ourselves with goals and intentions and pressure, instead of setting ourselves up with hefty measurements and resolutions, instead of putting all the pressure of greatness on the next 365 days and carrying that weight on our shoulders, maybe we should just meet ourselves where we are.

In this moment…..

Wherever you are, however good or shitty it is….

Just own it and give it a little bit of space, to simply and humbly be ‘enough’

Here is to 2018. 🥂

I am not sure what it will bring but I know with absolute truth it will be what it will be.

My only hope going into it, is whatever the outcome, I will have experienced it all wholeheartedly and will leave it behind me feeling it was absolutely and completely  ‘enough’. ❤️🤞27ED87E6-A4A9-4A0F-BFB2-0F6AC392BF73

 

 

 

 

 

 

 

 

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Helpless

There is nothing in the world worse than being helpless.

I don’t know what to do.

Everyday feels like we are trapped in a funnel of terrible circumstances that go from bad to worse. I am grasping at anything that could help us but I don’t know how to pull us out of this mess or how fix any of it.

It feels like all we are doing is circling the drain.

I can literally feel my heart breaking. It’s  a constant pain that goes from a dull shiver to a piercing shrill.

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I feel antsy and unsettled. My mind is racing but I’m frozen in fear and my body feels foreign like I’m living inside of a mere shell of who I used to be.

Desperation. Grasping. Fear. Paralyzing worry and constant hurt.

All I want to do is scream and panic and run away but it’s like I can’t move.

I feel like every day we are sinking deeper and deeper into quick sand and finding the energy or strength to jump into action and attempt anything feels impossible.

My Christmas tree has been sitting on the living room floor all week.

Time ticks. The days are morphing into one. Day and night don’t exist anymore.

I just sit- and stare- and think and listen for the next moment when Logan calls out for me in pain or need.

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I feel like a robot in survival mode.

I watch the moments tick by and wonder as each one passes if we this is what it feels like when you realize you are losing time.

I don’t like where this is headed-

Everyday that passes and things continue to get worse our hope fades.

We are trying to rally but we are so fucking stuck and there just doesn’t seem to be a realistic way out of this mess.

I don’t know what to do.

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I’ve never been in a place like this before.

I don’t know how to care for my child- and I’ve never been here, where I don’t even know how to comfort her or ease her suffering or my families suffering.

Jared and I try to support each other but the only words we have seem convoluted and confused and lack direction.

“This is just so fucked….” seems to be the only mantra we can muster up these days.

I broke down and took Logan for acupuncture the other day. I was desperately googling holistic approaches to pain and nausea when the name of one doctor kept popping up. I called him, explained the situation and he got Loggie in right away.

The treatment of pins and needles and a weird taser gun miraculously helped her and she had about 24 hours of relief.

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We were so happy and optimistic but, sadly, her respite was short lived and now she seems worse than before ever seeing him. We can’t get back in for another treatment until next week and I can’t help but wonder if any of this is even going to benefit her or if it’s just another way of grasping.

Everything feels like it is falling apart in our life.

Jared’s job is another nightmare. He thinks he will need to take an unpaid leave of absence and he is stressed about his and his clients that really cares about.

But his fucking kid is fighting for her life!!!!

 

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He needs support and help.

As a good friend of mine always says to me “There are only two kinds of people in this world… those who are part of the solutions and those who are part of the problems”

Ego is a fuck of a complicated thing.

To say this has been a blow to Jared at the worst time of his life would be an understatement-

He’s really struggling with failure and desperate not to let anyone down
but for me, all I want is for him to walk away from this situation better and stronger.

I just want him to be here with us, where we need him to be and where he needs to be. Present with his family in crisis.

I want him to view this time in his life as a reminder of how important it is to filter your energy and resources into places you know will support you when we need them most. And to let go of the rest. I want him to rise above.

Jared assures me it will all work out.

I’m not even sure what that means anymore or if he believes it either, but I’m holding on to his words for dear life at this point.

What we don’t need is yet another fight but you can’t control the shit-sometimes you just have to wade through it.

We don’t really need stupid cancer either but no point in fighting things we can’t change.

This is where we are.

We NEED to focus on staying strong. We NEED to focus on rising up. We NEED to get through this horrendous time.  It’s all we can do….

So for now, here is the plan….

1. Hospice. They are applying for a grant to see if we can get some home care nursing support. We have decided we want to keep Logan home as long as we can manage. If we get the funding then we can hire our own nurse or care-aid to come to our home a specific number of hours per week to relieve us and help care for Logan. Less trips to the hospital and we can create a support team that is in our own space.

2. We are going to do a stay at Canuck place in the coming days to work with their own specialized medical team on a symptom and pain management plan. Apparently they are much better equipped at this point in terms of thinking outside of the box on how to manage vs. reacting to Logan’s pain and nausea.

3. Another MRI has been booked for the end of January (but may be bumped up) and a referral has been sent in for us to revisit the surgeon at VGH to discuss a possible biopsy and see what he thinks.

4. We have some more tests scheduled (will they ever end?) that require some OR time so we are waiting to hear when we can get in to complete those. In the meantime we need to wait for Logan’s counts to recover from the previous chemo. Her system is very sluggish.

5. If she doesn’t improve or get better with this break from chemo (which is likely what will happen) than we do have the option to apply for a relatively new chemotherapy regimen. The thing is- the results aren’t stellar for Loggies tumour (we are pretty down the wire on options) and our oncologist fears without a break from chemo Logan may not even tolerate this new plan. Basically, it’s a delicate balance between causing more harm than good or as she put it being stuck between a rock and a hard place.

6. We are going to try to run away. I know it sounds completely ridiculous and stupid at this point but it’s our jam. We want one more (ok we want many more but for now- one more) trip away. It’s pretty far fetched at this point but we are throwing around the idea of sunshine and family escape time before the last ditch attempt at the iffy chemo.

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7. This one seems simple…. but is hard as fuck. We are going to try to not go crazy or become angry and petty and take shit out on each other. We are going to try to block the negativity and hurt and do our best to rise up during this fuck of a mess.

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And that’s it.

There  you have it team…..
This is where we are.
It’s super shitty but it is what it is and we doing the best we can.
I have to say thank you to SO many of you who are awesome.

Your love and nice messages and kindness and support really do offset the bullshit and keep us going.

Basically, even though most of you are complete strangers we love you all and you feel like you’ve become our family.

Funny how life works….there is always something to be grateful for. I am grateful for this blog bringing all of you to us.

So with that said, many of you have asked how you can help…. Literally, my inbox is jammed with offers and so many loving people pleading with me to let them do something….anything…

So, after lots of tears and putting our pride aside we decided it is time to accept help. There are going to be a few options and some amazingly supportive avenues if you do want to help. (No pressure)

A team of incredibly awesome Wild Mom’s are rallying to spearhead the help train us I will share the ways you can get involved on the Facebook page if you so wish to help.

Thank you all so much.

Much love to all❤️❤️

J

 

 

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