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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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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Balancing fear and hope

In the past ten days the entire world has been completely flipped upside down, including ours.

Trump was elected president and with that my entire theory on hope was thrown out the window.

Yes, the unimaginable can happen.

I guess if any one should know, after all these years of childhood cancer, I should.

How could I be so naive to think hope and humanity would actually prevail?

Why do I even believe in the possibility to overcome unacceptable situations?

Clearly I should know by now, sometimes they just can’t be overcome.

I have always preached “The only thing stronger than fear is hope.”

This week I have learned it is pretty easy to preach those words when the past 11 years we’ve always been lucky enough to find a way through our most difficult times.

Logan, so far, has beat every odd and we’ve skirted our way through devastation, (and around the world) so many times I think I convinced myself that hope was really enough.

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The past few months, however, my faith in this statement has been tested to the brink.

Every day feels like an absolute blow. Logan’s blood pressure hasn’t consistently improved and despite all of our attempts to manage her symptoms we reached the end of our rope.

There is no more medication that will help her right now.

I’ve heard words like “There is nothing more we can do, there are no right answers, I don’t know what to tell you, and I wish I could give you better news”

I’ve sat down with teams of specialists and BC Children’s Hospital’s top doctors, to pick their brains with all the questions I have stored in my mind.

No one knows what to say.

We’ve never been here before.

There are no answers.

It breaks my heart to think of every roadblock Logan has faced and what could happen.

It seems so impossible to be here, again.

And, although,  I can’t accept where we are at, by the same token, it is all that I can do is accept where we are at and move forward.

And hope.

Which feels like such bullshit.

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But this is our reality and fear seems to be winning these days.

I try not to think about the odds, or the statistics. I cling to the fact that Logan’s success rate for overcoming cancer so far has been 100%.

I am desperately trying to be grateful for what I have. I have faith in all of our doctors, and all the prayers coming our way, really I do….

But

Nothing seems to be enough. I am just so fucking scared.

All.The.Time.

Today is Day 27 in this bloody hospital (day 36 in the past 8 weeks).

I now know all the nurses by name and what rotation they are on. It is no longer a secret I am drinking wine in a hydro flask and the beeping of her IV/ feed pump have become the rhythm to the sound track of our day.

I have remembered how to navigate a feeding tube and can bolus liquid in like a champ.

The shock of relapse is fading and my brain fog is lifting, it is replaced with anxiety, sadness and disbelief. This can’t be happening.

I can recite the names of her new medication and am starting to remember the scheduled times we need administer all the drugs. Part of me feels confident getting back into the swing of my role as a momcologist.

“You’ve done this before.” I chant to myself before bed each night.

But the other part of me is just terrified.

“This is so f*cked up, how am I going to do all of this?” I find myself saying each morning after another sleepless night.

Despite some small victories and improvements the mountain of setbacks we’ve faced since being re-diagnosed is overwhelming.

There are new symptoms we have never had to face before and the unknown is what worries me the most.

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I fear it all.

But, by far, waiting is the hardest part.

My job is to keep Logan safe and comfortable and hope like hell the chemo is doing its job by shrinking the tumour without causing permanent damage to her brainstem.

For now she will need to use a wheelchair most the time now. She can’t stand or walk for long periods of time. She has fallen and fainted and with low platelets and a brain tumour, we just can’t take the risk of her hitting her head.

She is weak, and tires so easily. The smallest of task is monumental for her.

It has been difficult to keep her nausea under control, her appetite up and her headaches on a pain scale below 5.

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But it is the damn blood pressure that continues to be her biggest challenge. It is now randomly bottoming out and over the weeks we’ve seen the ‘drops’ intensify, leaving her confused and disorientated.

A couple of nights ago proved to be one of the hardest moments I’ve ever experienced as a mother.

Logan didn’t know who I was.

The cardiologist explained that her blood pressure likely dropped so low, there wasn’t enough oxygen for her brain to work properly. Her mind couldn’t process what was happening around her.

She didn’t even remember me.

And as she asked me numerous times what my name was, all I could do was cry.

Fear won.

In that moment it won and took over every ounce of my being and sadly in more moments than I’d like to admit to anyone, fear has been winning.

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I am trying so hard to be strong and stoic but I am tired. I am physically tired from the last few months and emotionally exhausted from the last 11 years, so is Jared and Brody, and so is our, sweet Loggie.

It is not a good place to be when we have such an enormous mountain ahead of us to climb. We are trying our best to take the time we need to find our strength. It is not always easy. Everyone has needs. The treatment plan is daunting and road to recovery is going to be long and hard on us all.

There is a plan moving forward and it is in motion. We are going to try to transition back to our home, back to normal (whatever that is?) and back to living the best life we can, together despite our new realities. Family time, and quality time together will be our priority now. It will be our biggest challenge to date.

As any parent would, all Jared and I want is for everything to be better right away and that just isn’t possible.

It feels like torture to have patience, to wait and to cling to hope.

It is hard to believe just three short months ago we were planning a family trek around Asia and today we are plotting out home care nurse schedules, insurance coverage, feeding regimens and chemo days.

It is humbling to think how quickly life can change, and trust me, it never gets easier to comprehend.

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We were also referred to Canuck Place this week and had our orientation meeting. Another blow.

For those of you who don’t know what Canuck Place is, it is a hospice.

But that isn’t how they sold it to us.

I was assured, hugged and then reassured that it was much more than just a place to take your child to die.

I was told it was a beautiful mansion full of love, respite and people to support us in every way possible as we care for Logan through this difficult time.

They tried to sell us on the laundry service, free massages, daily meal programs and family suites.

We didn’t completely bite.

We did, however, put our name on the list. We enrolled in the program and then left it up in the air.

We know the help is there if we need it but psychologically we can’t quite make the leap, just yet.

Free massage or not, our plan for now is to take Logan home, get through her chemo treatments, be together and wait for her to improve.

We are in the process of getting all our ducks in order to make that happen. It is a process that includes applying for grants, (universal healthcare my ass) getting an adjustable bed, a wheel chair rental, two IV poles, a minor bathroom renovation, a feed pump, syringes, nutrition, and all our new medication and schedules. Once that is set in stone we will be good to go.

In the meantime, we are spending the days going back and forth between home and hospital as part of our transition (or in other words a heck of a lot of driving and lifting of the wheelchair leaving both mom and Loggie wiped)

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Occupational therapy is sending someone next week to assess our house for any safety concerns, (I am hiding the cases of wine you’ve sent) and we are going to have a home care nursing team come by to check out our skills and give us the green light on our techniques.

I’ve been assured we will NOT be alone in this (insert sarcasm) although it feels very much like we are about to be.

Hopefully, all the logistics will be sorted by Monday and although we may not have all the equipment by then, we will go home soon after. Ideally, we would love a couple days alone to get our routine down pat before her next dose of chemo on Wednesday.

The days following chemo aren’t proving to be great, and there is some concern around the further effects of the therapy on her autonomic system.

But we aren’t going there.

This chemo has to work. Period.

There is no other option.

We’ve moved the goal post about as far as we can and now we have to wait.

For chemo to work

For Logan to get better

For our family to heal

Leaving the hospital is going to be terrifying in itself. Being in charge, knowing so much is out of your hands, yet rests on your shoulder is a burden I can’t find the words to explain.

When all you can do is hope while constantly battling off fear you realize sometimes being in the moment, actually, just really sucks.

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Time to regroup

If I had a dollar for every time someone said “Remember, you have to take care of yourself too”

I’d be a millionaire.

Everyone has good intentions but to tell you the truth, there is no taking care of yourself at a time like this. I can’t even comprehend what my needs are, let alone act on them.

Taking a break, in theory, seems like a good idea but leaving Logan’s side at a time like this feels completely foreign to me.

There is no shutting my mind off or doing ‘normal’ things.

There is no regrouping.

At least not in the beginning stages of this.

I know.

It is the fourth time.

The days following a relapse, learning your child has cancer again, and finding out you have to start a marathon of treatment from the beginning is all about surviving.

There are no luxuries. Everything becomes about basic needs.

Living no longer happens and functioning kicks in.

Conversation is hard to absorb. People talk but It’s impossible to absorb and stay engaged because your mind never stops racing with fear. You have so many thoughts and questions filed away and you feel desperate to remember all of them.

Friends come and go, people you forgot about reach out.

So many doctors swing by.

Suddenly you are living in a fish bowl.

The days seem to fly by but the hours and minutes just tick away and before you know it, it’s been a week since you were unknowingly admitted.
A week since chemo was actually started and you wondered, is this was REALLY happening again??? (WTF?)

It’s a week later and it finally hits you. Life has been flipped upside down and it is going to be a long time before it is your own again.

My only saving grace is knowing first and foremost I am a mother.

Regardless of the fact I feel completely lost in my own skin right now, nothing feels more natural or more important to me than being exactly where I am.

Beside my child.

It is because of this, all I truly want to do in these sacred, fragile, broken, quiet moments is WHATEVER Logan needs or wants of me.

Caring for her IS what makes me feel better.
Despite my tired eyes, ratty clothes, and fake smile being here with her feels very much like taking care of myself.
I want to take care of my family and the only thing I want to do right now is to be a mom.

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Happy Halloween. Grumpy about cancer.

Both Jared and I, as parents, decided long ago that the requirements of our kids would ALWAYS come long before our own.

We don’t take much time together, just the two of us.
We don’t spend much money on ourselves and we don’t dwell on the fact of what could have been instead of what is.

We don’t want to.

Many good things have come from this tragedy and we know if cancer didn’t strike our family we might have never had the same amazing experiences or the same amazing people.

We don’t like all that goes along with this, but we own it.

We love being together, we like who our kids have become and we appreciate the time we have together.

Our family has lived on the edge of a very steep cliff for many years.

We ‘get’ that Logan’s life is at stake and how easy it would be to fall over, lose our footing and crumble to the valley floor.

We also know none of this is in our control.

All we can do is what feels right for us, today, and every day, and being here with Logan around the clock is what feels very right.

In hindsight (BTW it is always 20/20) quitting my job and giving up my career was also right.
I’ve been able to be exactly where I’ve needed to be. I have less money in the bank and a bit more stress but I’ve also had a lot more time to be with my kids and I have no regrets.

I take peace in that.

I know Logan does too.

She never questions if I will be there for her or how much she is loved. She knows that come hell or high water there is no place else on earth Jared, Brody or I would ever be than be than here with her.

And that is true.

Nothing else matters.

Not now.

Now is about survival.

Now is crisis time and we are in the thick
of it.

We were admitted a week ago and since then each day has gotten harder and Logan has consistently gotten a little bit worse.

She had surgery, started NG feeds, had 14 doses of chemo, all of which are probably contributing to her continued overall decline.

Her electrolytes dropped and needed to be replaced this weekend. Her nausea got worse. She has had diarrhea, headaches and pain. Swallowing is getting harder, she has lost 5 lbs in a week and she has zero energy to engage, visit, text, snapchat or email.
She has been sleeping more than 20 hours a day and her blood pressure is more unstable at unusual times of the day.

Last night was a shocking 51/29

It’s been a bit of a mess to figure out.

Our minds are spinning and although we have an amazing team of doctors working around the clock to help her feel better we aren’t even close to where we need to be.

Logan desperately wants to go home.

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Feeling up to a little watercolour

But we have no idea if it will be possible anytime soon. We all hope so.
She’s sad and has cried every day about being in the hospital again. She doesn’t say much but I know she’s devastated about the entire situation.
We all are.

I feel deep compassion for her heartache and I too am sad, but to be honest I am also relieved to stay in this hospital a bit longer.
I am scared and nervous about being in charge and looking at her, the way things currently are, I know I am not ready to manage all of this, at home, on my own.

It is very stressful and I am still trying to wrap my head around all of  it (pardon the pun).

At least, here, in the hospital, we feel safe.

So, yet another new plan.

The ‘plans’ seem to be changing hourly these days. It’s how cancer works, you have to learn to roll with it.

Instead of rushing her to feel better, pushing her everyday to do more, to eat more, to drink more and to be awake more often, we are going to pull back.

Give her body some more time and space to process.

We are going to slow down the NG feeds and give her more fluids through her IV. We are going to try new doses of her blood pressure meds and give them at different times and we are going to keep ahead of the nausea and vomiting by giving her medications through her IV and her NG tube instead of forcing her to swallow them.

We are also going to let her sleep as much as she needs and work with physio to slowly get her up and moving again. We are going to have occupational therapy reassess her and we are going to introduce fluids and food by mouth again only if it is safe and she when feels up to it.

This plan may seem monotonous but it is a good plan. It will also allow her to rest while the chemotherapy eases into her system and does its job.
A few days from now her counts will be dropping. She may need blood or platelets. In just over a week she will be due for her next dose of chemo again.

It seems like everything is at a stand still but also moving forward. It feels overwhelming but also okay.

Logan needs this time to heal.

It’s about taking care of her and allowing her the space to regroup.
We are on board with the plan and are committed to being here with her.

Around the clock.

As long as it takes.

Thank you to all of you who are helping by sending your love, your words, clean pyjamas, onsies, and so much yummy food (and wine🍷😉). Our hearts and bellies are full. It is so very nice not to have to worry about cooking and to know how much you all care about us.

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A special shout out to my soul sister Kitty, who without asking showed up at the hospital at 10:30pm on Saturday night with a roll of quarters and a can of beer. #superrad

I called her crying and absolutely falling apart. I could barely breathe.

It is bound to happen.

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Post meltdown. Not one of my better moment. No pride.

Logan had been very sick that night and it ended up all over her clothing. Everything in the hospital was closed. I had only loonies but I needed quarters to do the laundry.
Being the resourceful gal I am, I begged outside of the emergency room entrance for about 20 mins in the pouring rain after a faulty vending machine left me with almost no money.
Feeling broken, I took my humiliated, defeated, and tired self to have a ‘break down’ in the 3R playroom.

I didn’t want Logan to hear me cry.

At some point I face-timed Kitty.

I never asked her to come, but she did anyway and it was exactly what I needed in the moment.

A friend.

Friends are one of the many blessings that surface during these hard times.

It is what we are most grateful for and we thankful to all of you for being such good ones to us.

We couldn’t ask for more….

Well…..except for maybe a nurse that encourages me to sneak out to my car for the odd glass of wine (Thanks Naomi) 😉😉

And bottles with screw tops and not cork screws…. (hint hint)

And cheaper parking,

And a full bathroom,

And bigger parent showers,

And….(you get the point)

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Wine in a Starbucks cup (it’s what we do) Hopefully I’m not going to get booted out of here. 😉

Yep, we really are easing right back into the swing of things here on the paediatric oncology ward. Its just like old times, only we are much older while the nurses are so much  younger….

Luckily, we know the ropes, and we know this is only one shitty week down, with many more uncertain times (and hopefully a few grand adventures ) to come.

After all, it is a life all over the map…..right?😘

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Life according to plan?

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Many of us spend our lives living a life ‘according to’.
‘According to’ means having a plan.

We as human beings seem to live to make plans. We need them. We strive to fill our calendars with them and even when we are not making any plans we are feel like we should be.

I am as guilty of it as the rest of you. No one likes to be stagnant.

Plans however, are often mistaken as goals and as such are often part of what motivates us. Plans to finish college, plans to find the perfect life partner, plans to land the best job, to buy a house, to have kids.

We plan for our future, our retirement, and even our death.

Our lives revolve around our plans and thus we spend a good portion of it in competition with ourselves and with others.
A life ‘according to’ dictates how we behave. It guides us down the natural path of what’s expected  but it also means that we are always in pursuit.
-Of the next big thing
-The next piece of the puzzle
-Of what we think will make us happy, successful, and complete.

The thing is, many of us never get there.

We never ‘arrive’ because plans always fall though, expectations always change, and somehow we always end up feeling like accepting where we are at (if it is not where we want to be) is a bit of a failure.

So what do we do?

We change our focus, readjust our outlook and set our sights on a new plan.

Most of us, including myself, measure our own life ‘according to’ plan by tangible, reachable goals but in doing so, sometimes, I think, we simply miss the point.

Plans don’t always give us purpose and direction.

Sometimes all they do is just complicate things.

Today, we got a plan to deal with Logan’s tumour progression.

I have felt very anxious for past month since we found out her tumour was growing and have desperately wanted a solid plan of action to deal with this problem.

I thought having a strategy was going to make us all feel stronger, more in control, and more empowered.

What I didn’t expect was receiving a plan and feeling more at a loss than ever.

Yesterday, I learned execution doesn’t always make you feel better.
Sometimes having a plan just makes you feel really, really, really afraid.

None the less, here is ours.

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Logan will start chemotherapy for the 4th time.

It will likely begin next week.

She will have surgery to put her port in as soon as possible. They are thinking Monday. She has been taking aspirin to lower her risk of a vascular stroke and she needs to be off the blood thinning medication for a week before they will risk putting her under the knife.

Chemo will likely start the next day.

To begin, we will take 5 days of an oral chemotherapy called Temodar.
The side effects are mainly the same as IV chemo except she shouldn’t lose all her hair and she will be able to take this medication in the comfort of her own home.
Her counts will drop, she will feel sick, and because she’s had so much chemo in the past she will likely need platelets and/or blood to help her bone marrow recover- hence the port.

There is a possibility of adding up to 3 additional chemotherapies to this oral regimen if we need them. Our oncologist said she open to doing so if Logan’s symptoms continue to progress during the first cycle of Temodar.

I have spent the last twenty four hours researching and reading studies and success rates on both options, temodar alone or temodar in combination with CCNU lomustine and vincristine.

There are two schools of thought. Ease her into this slowly and see how much toxicity she can handle or just go gangbusters and try to attack this thing with a more intense treatment. None of us know the right answer, I am not sure there is one.

Both are risky.

Of course the overall hope is the oral chemo will be strong enough to stabilize her tumour but soft enough it won’t totally damage her bone marrow any further. Which means she could take it longer. We just don’t know if it will work. The results are not outstanding but it is also a fairly new drug as far as chemotherapies go and information is fairly limited for Log’s type of tumour.

Truthfully, our options are all very limited and it will be a delicate balance between treating her cancer and maintaining a good quality of life.

We have been told that this oral chemo (or the combination of both) will likely not get rid of her tumour. The goal will be to stop it from growing any further and the absolute hope will be to see a little bit of shrinkage but probably nothing more.

Don’t get me wrong, this does not mean we are giving up- but it does mean we are being realists. It’s been 11 years, and we know where we are at. Each time this news is getting harder and harder to swallow. (Pardon the brain tumour pun)

Time is now our priority but a cure is still our hope.

If we can stabilize things with the oral chemo then we have more time to get her symptoms under control and hopefully she can feel better and enjoy more experiences with people she loves. Maybe we can book another trip, have some fun together and forget about all of this for a while longer. This is the goal.

Where things stand right now, we are basically swimming against the current.

Her symptoms are getting worse, likely because her tumour is progressing slightly as the weeks tick by.
We are all in agreement that it is time to treat the tumour because despite our efforts over the past two months nothing is working and she is steadily declining.

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We are now in a time crunch.

Our oncologist broke down and cried. She told us how sorry she was that we were ‘here’ again and she sobbed feeling responsible for not curing her. She reassured us that she was staying strong in her quest to help Logan get better. My heart broke for her along side of my own.
Its been a long road. She’s an amazingly smart, diligent and optimistic doctor yet she’s an incredibly tough nut to crack. Her communication and bedside manner has not always married up to what we needed in the moment but today when we saw her raw emotion we felt how deeply she cares about Logan and our whole family.
It was also in this moment I also realized with absolute truth that having her on our side is Logan’s best chance at survival.

No more fighting her.

No need for a new oncologist, we are and always have been, in this together.

We also met with her surgeon Dr. Steinbok.
He wholeheartedly agrees with the plan to try chemo first.
He thinks the risk of surgery far outweighs the benefit at this point.
His perspective is the damage and tumour are intertwined and are progressing systematically by blanketing normal and healthy brain tissue.
Her tumour is not growing like it did before, there is not a bulk or solid lump for him to deflate or take out and his attempt to help may cause her more harm than good.

He did suggest that because he’s turning 70 and is winding down in his career, we meet the neurosurgical team at VGH. Apparently he’s referred us to the ‘go to’ brain tumour guy over there.

Dr. Toyota will be our contact ‘just in case.’

We don’t know for sure but there may be a place for surgery down the line. Maybe a biopsy for further molecular studies, maybe a new technique will be discovered and if so we can be reassured we have one of the top brain surgeons in Vancouver at our finger tips.
Dr. Steinbok comforted us by telling us he’s not passing us off and assured us he will follow up on Logan’s case. He also pacified us by saying if it ever did come down to surgery and we wanted him to be in the OR, as long as he still had a license he’d happily assist.

Our endocrinologist stopped Logan’s growth hormone injection for obvious reasons, and the cardiology team hooked her up to two separate monitors so they can get a better picture of what’s going on inside her twenty four hours a day. We reviewed some test results, and were told Logan’s frozen tissue samples from previous surgeries had been sent back to pathology to double check for genetic mutations and certain changes.

And that was it.

We left with a new plan.

It’s not a plan we like. It is not where we want to be and it is definitely not fitting into our ‘life according to’ but it’s where we are at and in the words of Logan herself  “We are going to have to figure out a way to roll with it.”

And that is just what we will do.

Again, for the fourth time.

We will add more chemo beads to her already long necklace and we will readjust, refocus and remain hopeful that this is just one more of the many detours rerouting us in this life that is all over the f’ing map.

Here we go again……

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Just another day in a month of childhood cancer awareness.

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The title of this blog is ‘Life all over the map‘ because it feels symbolic.
Our life has become a quest to cross off our individual must see’s and experience all the world has to offer together while desperately trying to forget the reality that our child lives with a brain tumour.

Today, however, was a day I was reminded.

Living with cancer means you are always just one shitty symptom away from a trip to the hospital.
Upon arrival to the clinic today Logan’s oncologist asked me if I had a sun burn.

She knows we like to push the limit on how far we travel and probably just wanted to make sure Logan’s symptoms weren’t related to some new strain of the Zika virus.

I assured her.

My redness was hives.

The kind that still manifests even after 11 years of taking your child to the same damn cancer clinic.

It doesn’t get easier.

We did all the tests.
Bloodwork, urine, touch my finger, touch your nose, walk in a straight line, mumble strange sounds.

Dr. Hukin kindly asked very specific questions to Logan about dates and time frames. Likely forgetting that memory is not Logan’s strong suit while obviously overlooking the fact that when you feel shitty for so long- the hours turn into days, the days into weeks, and before long time becomes irrelevant.

We told her everything. Dizzy. Tired. Headaches. Pressure behind the eyes, shaky hands, weakeness, nausea, hoarseness in her voice. Tired. Weight loss, stomach pain. Tired.

She checked her notes.

Laying down she was ok but standing up her blood pressure bottomed out.

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Not good.

The last time this happened the tumours were growing but neither of us mentioned it.
You see, with cancer, past performance does not always dictate future behaviour.
It’s random.
Things don’t always make sense so neither of us mentioned doing another scan.
Just yet.
It’s only been three months since her last one and we have lowered the dose of one of her medications so without really saying anything out loud we decide on a plan.

Some IV fluids today, go back up to her original dose of medication and come back in next week.

Logan agreed on the plan and then encouraged me to go to Starbucks.

First thing I noticed when I got back is that she let the ‘new to us’ nurse access her only good vein.
Smart kid.

I told Alan (the not so new nurse) that no one was was allowed to use that vein. He assured me next time he’d shave Logan’s head and find one closer to the primary site.

I am pretty sure he rolled his eyes at me too.

I deserved it. I was in a full state of ‘cancer mom’ anxiety and ready to rip into someone simply because there is nothing I can do about all of this and I hate it.

Being out of control. Being so vulnerable, afraid, and so fucking tired is hard but a’life all over the map‘ is like that. There is no slack and it’s full of rugged terrain and uncharted territories.

One day you are planning a trip to Laos (I planned on sharing this with Logan’s medical team next week😉) and the next you are talking yourself off a ledge and chanting a million silent excuses as to why you shouldn’t beat yourself up, how you didn’t know (even though you should by now) and reminding yourself how next time you will promise to come in earlier.

Because even after 11 years- the truth is- you never really get any better at this.

September IS childhood cancer awareness month but the reality is every month IS September for us and so many other families. 😘

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Love, Pray, Drink (Wine)~ I’m going to India

pictures by Noriko 039

I am not even sure how to begin this blog, because the words I want to share seems stuck somewhere between the knot in my stomach and the lump in my throat.

It doesn’t happen very often, but I don’t know how to say what I want to say (Sorry in advance but I am about to mumble).

I am a bit in shock, and a bit in awe. I am teetering somewhere between questioning if I am about to do the right thing, and scared shit-less about doing it.

Despite the fact that I think I might have asked the universe for this opportunity- (apparently writing things down works)  I don’t know if I was entirely open to how this was about to manifest itself.

I am a Libra, so basically, I feel completely out of balance and my head is spinning.

I know- you are already thinking “What the F?” so I’m going to get on with it.

Up to you, if you want to read ahead. This post is about to get deep and long and in the end I will be asking you for something.

If it seems too much, you should close your browser and move on because I know one thing- I am going to need all the support I can get around this decision and any negative thoughts from cyber world won’t be helpful.

I’ll start from the beginning (well kind of)

It all started June 3rd 2005-  you know what day that was- The worst day….

So, skip ahead 10 years- and 2015 did not just have tough days, it was tough year.

There were many things that were great about it, but to be honest 2015 was one of the toughest years, we as a family, have ever had.

For me, personally, I really struggled. Every time I thought we turned a corner and inched ahead, something would slap us in the face, try to drag us down, and like burning a candle at both ends, after a while, our lights just fizzled out.

Normal life is not normal any more in our world and its hard to share. It feels ungrateful to write about how difficult things can be, when I know damn well I should not complain. Thirty four funerals for amazing kids that never got the chance Logan has is a constant reminder how lucky we are.

But lucky isn’t lucky in the brain cancer world, and cancer is not black or white.

Now, every day is a challenge and readjusting expectations and trying to find more joy and less worry and seizing the stolen moments and accepting that life will never be the same again- is our new normal.

Normal for us is about 40 medications a day to manage, routines that include support groups and support systems, learning disabilities and pain- so many headaches, and doctors appointments. Weird and foreign worlds of disability organizations and programs where people living with a brain tumors really don’t fit.

It seems that common sense to us doesn’t make any sense to anyone else and nobody really ‘gets’ us. There is a constant nagging worry that the tumor might, at any second, yet everyone treats us as though we should be ready to move on- be the heroes and inspire others to fight the good fight.

So we do the best we can.

We step up, we smile, we share our story and have as much fun a we can whenever we can. We really do and it is not all bad, but just beneath the surface our family is a bit more fragile than we portray and to be honest, 2015 was pretty darn shaky for us.

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Our goal has always been the same, since June 3rd 2005

LIVE. NEVER GIVE UP. KEEP MOVING FORWARD. HAVE NO REGRETS but it is harder to achieve these goals year after year and sometimes we sort of lose our momentum.

I could write an entire book about capacity, about enduring life when you have no choice but try to accept circumstances and situations that are completely out of your control and ones that you despise.

When you live knowing that life could take an awful turn at any moment you feel obligated to never feel shitty. I could type endlessly about how it feels to be stuck, and helpless and about what it is like to desperately long for the ignorant bliss and nativity that you once took so for granted.

Set back after set back makes it harder to enjoy the little moments. It is just part of the deal.

And you ask- “What the F is this all for? Can’t it just get better now, haven’t we all learned enough?”

I have so much guilt for these feelings. You have no idea.

I have so much anger for what has happened to my child (both my children) and I feel tortured inside knowing that saving her, has come with such a cost to the quality of her life and to all of ours.

Life is like a roller coaster. One that is fast and fun and exhilarating but at the same time one that you aren’t ever allowed to buy a ticket to get off.

2015 was a rollercoaster ride that was amped right up.

We started the year being audited by the CRA going back 3 years- (because of our rental) almost at the exact same time the geothermal system in our rental property finally kicked the bucket and although we should have been prepared for both- we weren’t, so, it cost us shit ton of money.

But it is only money. Having less cash is stressful but honestly, the one good thing that comes from cancer is perspective. Money is just paper. You can always make more dollar bills. It is not that bad. Also, if you make the minimum payment the bank always give you more credit. Not such a bad system, we roll with it.

But, for Jared being the only one working, he struggled in 2015 more than ever to make his ever increasing sales target. The falling Canadian dollar and current state of the economy didn’t help one bit as he busted his ass to make his budget and pay our bills. Jared is fiercely competitive and watching him stress caused our family much stress. He is kind of like the captain of our family plane- he never runs up and down the aisles, or panics, and Jared did a lot of panicking in 2015 so that too was really hard on us all. We weren’t used to seeing him unsettled.

Logan graduated high school, which for most kids is totally awesome but for her (and all of us) meant a big fat question mark. Her graduation was such an milestone but, was achieved in part to the huge amount of support and modifications her teachers made for her. When that support was suddenly ripped out from underneath of it was an unexpected adjustment. We didn’t know where to turn for help and we didn’t realize how much we relied on the help we were getting.

We had numerous scans and assessments to find out what Logan’s future potential could be which only solidified the damage done by years of treatment. Physically, psychologically and emotionally this disease has taken it’s toll and the late effects of treatment on her body and mind has been devastating for not only her but all of us that love her.

It is heartbreaking to watch. This is a time in a young adults life when opportunity should be on every horizon, but for Logan the doors are closing faster than she can get to them and the answer seems to be no at every turn. “No you probably won’t ever have children of your own, No you can’t take this program full time, No you can’t drive, No you can’t stop this medication, no Logan you can’t, you can’t , you can’t”

But be happy. Live life. Be grateful. You are a survivor.

We finally upped her medications and got a good mojo at the end of the year. Her pain was under control and we navigated the new world of difficult college courses with very little support. As any parent knows, teaching your own child is impossible, try teaching a child with a learning disability when you don’t even fully understand the extent of disabilities.

I’m sure you can imagine the large amount of tears that were shed, on both ends.

This year we fought the system, appealed decisions, begged for help and finally got a plan together that supported getting her into a college program  very part time, then we fought the teacher who didn’t think she should be there in the first place.

We got her a job volunteering at a daycare (which she loves and is perfect at) We drove her to volunteer at the Ronald McDonald House and at Camp Goodtimes (so much driving) just so she could feel part of something and continue to give back.

We agreed to be the face of the Canadian Cancer Society 2015 campaign and we raised a bunch of money for brain cancer research, because it is the right thing to do. We shared our story and we also gave back all we could- we smiled in gratitude for the opportunity to be part of a better solution for brain cancer, and inspired others to do the same. We committed to a competitive lacrosse schedule, and to encouraging our son who has an ambitious and creative mind to pursue what he loves- acting. We went to so many auditions,  learned so many scripts, and worked through the emotion of so many rejections. We started cyber school and the frustration of homeschooling, but not really homeschooling, while navigating our way through new age technology we don’t have a clue about.

And then…..

At the end of the year,  we collapsed.

And we did what we always do…….

We ran away from our problems, and our life.

We booked a trip to Asia, threw it on the line of credit and got basically got the F out of dodge right before holiday season’s gluttony began. We just knew we couldn’t handle it this year. We desperately needed to recharge. So, we flew to the other side of the world to drink new brands of beer under different palm trees. We saw very different cultures and ate very different food, and we put ourselves in some very uncertain situations only so that we could find our way out.

We connected as a family, we laughed, and did exactly what we hoped to do- we escaped our reality and got one hell of a tan (bad, bad cancer family- I know)

When we came back, 2016 seemed much more promising. We were refreshed and ready to ‘live life in the front row’ and head to the ELLEN show (yes…that is another blog- it was so amazing, we had a fabulous time, and I will share all the details)

But something was not quite as I expected when I got home and it was almost as though I was yearning to go back.

Here is the deal, Asia but specifically Bali was like a freaking awakening for me. Going to the Yoga barn, Soulshine and the whole experience with Michael Franti, spending a few days navigating my way through new situations and a new country gave me some sort of a super powers. Or at least that is how I felt when I was there- like I had super powers and then when I returned home I felt like those powers started fading.

I don’t know how to explain it- because I know they are not super powers.

I also know that I am not any different or better than any one else but in Asia I felt really connected and present in my life and I was fully aware of it.

I knew I wanted more of that feeling at home, but home, is just, well reality so how do you get that?

It was almost like while I was away I could almost see my thoughts creating my reality (OK a bit much- I know but kind of true).

I could actually feel myself shifting out of my negative thought pattern and I had this knowing that it was time to let go of the past. Like a fog lifting I could feel myself moving away from the resentment and anger and guilt around what cancer has done. I was ready to figure out how to approach the ever allusive emotion of acceptance which has been dodging me for so long.

I was aware in Bali, as all the cool things were manifesting, that I was living life on purpose. I was in harmony and it felt great.

I hope what I am saying makes sense to you because it barely makes sense to me, and it is a bananas concept- but for those of you who ‘get it’- you will ‘get it’

It just felt honest. Like somehow over there, that I could really attract whatever I wanted in my life. I don’t feel like that here at home.

I mean, really,  here I was I was floating around on the other side of the world sitting across the table from one of my favorite musicians and heroes- which should have been completely impossible. Even now as I think about it, I pinch myself, I know it really happened but how did it happen? and how do I attract more of that awesomeness?

So, my impossible reality was happening in right front of me, and so were my thoughts. So clearly, that I could actually feel them forming and I knew each one of them were going to happen.

This was the first time in forever this has happened. Almost since Italy chemo (for those of you who have followed our story) and we all know how good that worked. Bingo. I need more of this.

I chatted a bit about all of this with Michael’s good friend Scott and a few of the other yogi’s at the retreat the day before. Everyone was totally supportive of my deep contemplative thoughts since they were all in Ubud doing the same thing.

I was encouraged to write down my goals for 2016

Here they are (I should note- this list originally began with “Drink more water” which somehow got axed from the list because it didn’t seem profound enough but is one thing I really do need to do)

  1. Work on being more open and saying yes. Be limitless and expressive both physically and emotionally. Don’t hold back. Be impeccable with my word. Mean what I say, say what I mean.
  2. Try new things as they present themselves. Get out of my comfort zone.  Don’t worry so much about how I look in front of others- just participate.
  3. More listening (I have so many incredibly smart people around me)- less talking (tough for ole’ loud mouth me)
  4. Truth- live it- own it- speak it
  5. Find more passion in my life, in my marriage- and in my self. Focus more on things that I am passionate about and love to do. Surround my self around people who are truly passionate about life and love what they do.
  6. Create a job or any opportunity to do something I love- that gives back to others
  7. Work on acceptance- of so much, but mostly myself. Don’t let fear, guilt, shame anger, and sadness own so much of my heart.

Pretty intense right???

So I come home all recharged like I’ve just mastered the path to self realization, all preachy and feeling like a brand new person.

Lucky you- if you didn’t get a chance to speak to me during this time. ‘Got her shit together Jenny’ is quite something if I do say so myself- (insert sarcasm here)

I mean who was I kidding a few hours in downward dog with a famous musician I thought I was Oprah freaking Winfrey. “Come on!”

Well, the good news is the universe didn’t buy it for one second or maybe it did.

I still don’t know- but what the universe did do was serve me up an opportunity.

It took one look at my New Year’s resolution list- amalgamated all of them together (with a focus on #6 ) said- “Prove it.”

And just like that I am going to INDIA….. IN 5 WEEKS.

India_SMALL

Holy shitballs!!!

Now India, at all scares the shit right out of me to begin with let alone in 5 weeks.

But insert the fact that I am going alone, or more so with group of cancer survivors and caregivers I have never met to volunteer and give back in some of the most impoverished places to some of the most vulnerable people in India and I am feeling really, really afraid.

This is SO outside of my comfort zone, I can’t even begin to tell you how outside it is. First off, India has never been on my radar. My shallow self knows it doesn’t have the same beach appeal as my other fancy vacation spots, apparently there is no swimming pool.

But this is SO NOT A VACATION.

And to be honest this is the farthest thing I would ever even consider enjoyable- because I am so scared of it. I know from the deepest part in me that it is going to be life changing and incredible and probably one the best things I have or will ever do in my life but the thought of it still makes me extremely uncomfortable, completely vulnerable, and totally nervous. Which I have been told is the whole point.

The connection to this program http://www.afreshchapter.com/fresh-chapter-alliance-foundation  was made through a fellow oncology dad. I have no idea why or how he knew or thought this would be a fit for me but he decided to link myself and Terri (the founder) together and I instantly could relate to her and her vision for her foundation. As it turned out a spot had opened up (sadly the reality of cancer) so after a few long phone call discussions and days of tossing the idea back and forth we both decided I should join this March program and participate.

So I am going to INDIA IN 5 WEEKS!!!!

Taj mahal

I have literally spent days with my throat in my stomach contemplating, I have made vats of chicken soup (most of you will get how bad that is) I have drank a couple bottles of wine (with no answers at the bottom) and I haven’t slept much.

I have asked a few very smart women who I treasure dearly for their honest advice and I haven’t liked everything I heard, but I owned it.

I was told that maybe it was too much and I needed to stay strong for my own family.

I was told that they worried I was losing sight of the really amazing small things in my life, and that not everything needed to be so big.

I was told I needed to settle down and hunker down and take care of some very tangible things at home- likes the bills.

But what each one of them also said was that no matter what I decided they knew I was going to do the right thing. I needed to come up with the answer on my own and no matter what I decided, they would love me through it.

In many ways, I know I hoped everyone would steer me away from going, but  never once did anyone make it their decision to make for me. In the end, my husband, my family and my best friends all said the very same thing,

“Do what your heart tells you…”

So tonight, I sat quietly and I asked myself what I wanted to do- and it dawned on me. I want to be humble and I want to be happy. I want to think more with my heart and less with my head. I don’t always want to do the things I think I should, to have things I think I need. I want to do things I feel are right and loving and compassionate where ever that takes me.

So there was my answer.

I AM GOING TO INDIA IN 5 WEEKS.

children_India

Would I regret or be angry at myself for not going? Probably not.

And you might be reading this and think I could likely find the profound experience I am seeking in India right here at home if I tried. You might be right and you get to have your own opinion.

But that is the point isn’t it. We all have to find our own way.

and obviously I haven’t or at least not yet.

So maybe I do need to go to India, and be completely defenseless and outside of myself and totally uncomfortable and alone to find myself. To find acceptance and peace and whatever the hell else it is I am looking for.

Maybe I just need to trust- that the universe is like my freaking genie and it saying “Your wish is my command”

Or maybe I just need to go to India and come back, get a job, get over myself, just chill the F out and accept that cancer is an asshole but no matter what we as a family are always going to be OK.  I am going to be OK…. and that struggle is basic and universal.

I don’t know- but what I do know is that now that I have committed.

So I am all in- and that means

I am going to INDIA IN 5 WEEKS!

Overpopulation_1677834c

It also means I need to raise some money to support going through this program with this foundation to participate.

I will pay what I can but the money raised through this campaign goes towards the program costs, accommodation, food and the facilitators, writing workshops, 6 months of ongoing support groups and community programs, all the places we volunteer, clothing and a few cultural experiences. Any money raised above my goal will help with grants and scholarships to send someone else on one of these adventures.

Part of raising the money is also about fully getting behind this idea, this foundation and it is about putting yourself out there and being vulnerable enough to ask for people to get behind you and support this cause.

Asking for your support scares the crap out of me.

I can ask for a lot of things, for others, no problem, but I feel guilty asking for anything for myself (which might be something I also need to work on in India)

So- with that said I generously ask- Will you support me in doing this volunteer trip to India in 5 weeks time?

Will you get behind me and encourage me and donate to this foundation via my personal page and support this cause?  Will you click the link and sending me whatever you money you can so that I can go out into the world and give back what ever it is I have to share?

If you can’t help financially, that is OK and I understand.

But will you still send me good thoughts and love and compassion and understanding as to why I am doing this? Will you try not to judge.

Will you share my links on your pages and re-post this blog and story and will you ask others to not only get behind and my family but this amazing foundation?

I know we could all use healing…each one of us for different reasons, but we are all the same and we all need each other.

The program means going to New Delhi  for just over 2 weeks and my volunteer choices will include spending 2 weeks volunteering at either Mother Teresa’s home for the destitute and dying, an orphanage or a home for abandoned women. I will also have the opportunity to share my story and my families cancer story with other survivors at the program, as well as, families in India going through cancer. I will get to connect with myself and I am sure I will get to learn a lot of lessons both big and small which I hope will make me a better wife, a better mother, a better friend and caregiver.

If you choose too come along and follow this blog, I will also get to share this experience with you all. I will commit to writing to you from India and sharing not only how my participation affected me but also how your support has made a difference to the people I will meet in India and to myself and my entire family.

Thank you from the bottom of my heart.

Here is the link to my personal fundraising page if you’d like to donate and support me on this crazy adventure. I Thank you, Thank you, Thank you so much in advance and I promise to pay every dollar forward in the love and care I will give away to others.

https://www.volunteerforever.com/volunteer_profile/jennifer-montgomerylay

 

And here are some videos about The Fresh Chapter foundation and what it is all about.

 

 

 

 

 

 

 

 

 

 

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Dog piss kind of day

 
May 15, 2008 6:21pm
So I woke up today and my dog had pissed on me.
No kidding.
6:30 am and Loggie woke me up to tell me that she thought her feeding tube came undone and was leaking. She pointed out that we were both wet.
Turns out instead it wasn’t stomach acid or last nights dinner, instead our dog Jersey had urinated on us.

I am sure you can imagine how impressed I was.
The dog knew right away that she would be banished to sleeping in the garage and ran to hide from my wrath.
My day began with the washing of all our linens, and clothing and bodies.

I couldn’t believe it, but I knew it was a sign. This was going to be a shitty day.
I took a big deep breath and sarcastically thanked god in advance for the warning.

We had appointments at the hospital today. Loggie had a dexa scan to see the extent of her bone deterioration and then we met with our oncologist to talk about Loggies condition.

Dr. Hukin was also a bit alarmed with the continuation of the “leg and I can’t see episodes”. She is concerned and wants to try to give Loggie a mega dose of Dex (the steriod we don’t like) to see if it will be enough to cause the swelling to come down in the brain and the episodes to stop. She hasn’t had one of her “episodes” in the last couple of days though and when I explained to Dr. Hukin the irregularity of these episodes she too seemed confused.

“They are happening more often,” I told her, ” but not everyday, having said that when she does get one it is almost certain that she will get 3 or 4 more to follow that day”

She consulted with another doctor and they agreed that it would be a good idea to rule out the possibility that she could be beginning to get seizures. An EEG is being booked for the next week or so.

The obvious question came up about whether or not she believed this was a result of tumor progression. Of course she couldn’t answer it.

I hate the dance around questions. Sometimes I feel like our oncologist is more like a politician than a doctor, so I asked her straight out if she had catagorized Logan as being palliative.

Again she danced. She didn’t want to answer the dreaded question.

I told her about my session with Dr. Kuttner, I told her I knew they spoke and explained that I had been struggling with emotion ever since that day.

She explained to me that yes, we have exhausted all of the regular treatments. She told me that she recently discussed Logan’s upcoming chemo with the oncology department at Toronto Sick Kids. She wanted a second opinion. They came back and told her that at this point they would not offer Logan cisplatin. The feeling being that she relapsed on chemotherapy twice and since the tumor continues to grow and seed other areas of the brain. Basically it is pointless subjecting her to the poison when really there is little hope.

Dr. Hukin shared this with me. I know it wasn’t easy for her but she shared that she was willing to offer the treatment despite her colleagues opinions simply because there are so few cases like Logan’s. There is very little information to go on or compare to. So basically a shot in the dark.

She explained the risks again, reinforced that it is an aggressive treatment and then finished off with telling me that she also believes that maybe it is time to try this chemo as we have talked about it for so long. She read the study, she thinks it is promising. She said that we wouldn’t give up hope.

You could tell we both felt a bit unsettled by our decision but mostly about the uncertainty. Logan was not in the room while we talked so I began to cry.

Pretty soon I couldn’t stop. Although I have know we were at the end of our treatment options I have never FELT like we were. It was a bit of an awakening.

Dr. Hukin explained how there were other trials and combinations of chemo that we could try if this combination of radiation/chemo failed but also explained her position on
‘at that point, what would we really be doing’- you get the point.

Logan came into the room, obviously she could feel the tension and could see I was crying.

“What is going on?” she asked me. “Did they find a new tumor on my spine in the dexa scan?”

“No” I replied “They didn’t find any new tumors, mom is just crying about the ones you already have”

She looked at me kind of strangely. “Haven’t you already cried enough about those ones? ”

I smiled, she was right.

I explained to her how this was going to be a tough chemo and how she couldn’t have much more chemo than she’s already had, and that I was worried about her.

“Don’t worry,” she assured me, “It won’t matter Mom because after this chemo I won’t need anymore, my tumors will be gone”

Dr. Hukin reiterated that we were not losing hope. We could not fall apart and now more than ever it was time to stay strong. I apologized for always crying with her, she explained to me that it was what she got paid to do…make parents cry….the sucky part of the job she told me.

Anyways we left with a plan, or somewhat of one…we do the best we can with what we have for as long as we can. We will know when it is time to make other decisions or move forward with the palliative team. She assured me Canuck Place was going to be there if we needed it. If we weren’t ready, then neither was she. I have such a love/hate relationship with this woman.

I left the office with some of the good Kleenex from the nurses offices, and got in my car. The sun was shining brightly and everyone enjoying the beautiful day and all I could think about was

My DOG PISSED ON ME!!!!
I knew this day was going to be a crappy one and it was. There is no way to prepare for a day like today, you just have to take deep breathes, say the word fuck a whole lot of times with your inside voice, stop at the liquor store for a good bottle of red and head home to wash your linens one more time…

Tonight will be clean sheet night. Tomorrow is another day. Summer has finally arrived.

It is not all bad.

I will keep you posted

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