Add it to the F**k it list

It’s been a while since I’ve sat down to write.

The thing is, I feel like a broken record every time I put my fingers to the keys.

“Things are’t great. We are stressed. We are doing our best. I want to eat my own hair, or drink all the wine in the house for breakfast. No, Jared and I haven’t decided to get divorced YET 😩 but some days we are barely holding on and No, Brody’s hair isn’t suddenly grey because of his own stress but yes mine is, thanks for noticing”

You get it.

Life has been pretty much the same. It has been uncertain, up and down, and most the time the worst it has ever been.

We had a terrible few months. October, November and December were some of the worst days of our lives. We spent weeks in the hospital. No one seemed to know what was going on with our sweet Loggie but in the end it was decided that we needed to stop the chemotherapy.

IMG_1762

Consensus was that she was declining more quickly than she should because the 300 plus doses of lifetime chemotherapy was throwing her entire system into crisis.

Basically, her body was saying no more.

This terrified us because we knew we hadn’t reached our goal of shrinking the tumour as much as we needed to but we also knew that we were playing Russian roulette with every dose we gave her.
The Coles notes of our discussion with Loggie’s team was if we gave her too much more chemo might actually kill her before the tumour did.

Ethically, we needed to make a big decision, was the risk of what we were doing worth the benefit of what we might achieve?

We’ve been told a zillion times and we ‘get’ it.
This disease no longer fits the criteria of  curable.

So the question we needed to answer was, how far did we want move the goal post?

We entered the grey area of quality vs. quantity of life.

There was a lot of soul searching and crying and in the end we decided to try giving her only a partial dose of treatment.

We proceeded with one final round of poison in November and crossed our fingers that we would see just a little bit more shrinkage on her next MRI.

Our oncologist encouraged us to remain hopeful.

“I know…” I could barely make eye contact with her, “You have always told us to be hopeful. I try, but I fear I am running out. What if hope is not a renewable resource?”

She awkwardly paused mid sentence and her eyes glassed over. It was the second time I knew she was going to start to cry since we’d been admitted.

“I ALWAYS have to remain hopeful….” She said, “Or I would never be able to continue to do this job.”

I smiled and hugged her. I could read between the lines. I could also feel how hard this was on her as well.

We stabilized Loggie, flushed the chemo out of her system and spent Christmas together being showered with amazing gifts and unbelievable support from our community.

2017 ended and we quietly thanked the universe for giving us another year together, while silently begging for an easier 2018.
January seemed promising. I didn’t want to write much or be cocky in the fear of jinxing our good fortune. Other than a few trips for routine blood work we avoided the hospital all together.

I wondered, maybe the chemo really was causing her so much harm? Maybe taking her off treatment was the key to helping her feel better?

I started to let the hope flow back in….

IMG_1941

Then, just like that BOOM>>>💥💥💥

We were admitted back to hospital.

Her MRI was scheduled for Feb 1st. The days leading up were ‘iffy.’

IMG_1726

Logan had started another cycle of vomiting and her blood pressure was ‘all over the map.

By the time we arrived for the scan that morning she had already been sick three times and there was concern as to whether the docs would be able to stabilize her enough to lay in the machine for an hour.

Scanxiety is a real thing.

Oncology parents and cancer patients know it well. Doctors always try to reassure us by saying the picture is only one measurement of success but we aren’t stupid, the tumour shrinks, the treatment is working. The tumour grows, we are fucked.

But what happens when the tumour is stable?

Well, in the past, a stable tumour used to have us leaning on the side of victory. As long as Logan was doing ok and the tumour hadn’t grown then we would accept success as ‘no change’.

Sadly, this isn’t the case for us anymore.

We got the results of Logan’s last MRI and her oncologist, Juliette quietly and solemnly told us the November dose of ‘last ditch’ chemo hadn’t worked and we didn’t see any change in the residual tumour size.

What used to be good news, was now suddenly a shock.

The tumour at the size it currently is reeking havoc on Logan’s autonomic system. Without shrinking it down any further, this is as good as it gets. The problem is, the way her system is now, any more chemo is out of the question. Her body needs a break.

Puzzled, I asked our oncologist what she was trying to say. Once again, she gave me the awkward stare and said “We are now stuck between a rock and a hard place….”

IMG_1837

She also told us she wanted to admit us to hospital to get Logan’s symptoms under better control and try to come up with a better long term management strategy.

By the end of the first night of admission, Logan was in full blown crisis. Her blood pressure went from 180/130 and then crashed down to 31/14. She was screaming in pain and vomited up to 20 times. Morphine was being infused around the clock along with every single every other medication cocktail the doctors from Endrocrine, Acute pain, Nephrology, Cardiology and Oncology could come up with. Juliette consulted a specialist in dysautonomia from the Mayo Clinic and was referred to some hot shot doctor who moved to North Vancouver. We felt hopeful but unfortunately were met with the same answers we had already been given. Logan’s autonomic system failure wasn’t responding to treatment because there was a tumour in the brainstem overriding all the medication.

IMG_1772

Fuck.

Now what?

We spent two weeks in the hospital meeting with every single kind of doctor. They racked their brains trying to come up with a plan. They tracked the extreme swings in blood pressure, heart rate, pain, vomiting, sleep patterns, breathing, and neurological function. We watched her like a hawk and feared a possible brain bleed from the extreme blood pressure swings. The days were intense and no one seemed to know what the right answer was.

Time after time we heard the same thing from everyone….

“We don’t know…”

We crossed off drugs that weren’t working, and we tried new concoctions and combinations of drugs we hadn’t ever heard of before. Finally after a couple weeks of trial and error we started to see improvement and Logan’s pain and vomiting and blood pressure started to stabilize.

We slowly detoxed her off of the 24 hour opioid infusion to see if the 10 new pills 😳😫 a day were in fact doing their job.

BINGO….

She seemed better.

IMG_1875

Juliette let out a sigh of relief and this time, I looked awkwardly at her and started to cry…..

“Hope, right?”

She smiled. “For now.”

We chatted about what was really happening. She told us she wasn’t sure what was triggering these episodes and she couldn’t actually be clear if these were cyclical episodes or Logan’s body succumbing to the tumour but she assured us she had a plan….

A. Manage the symptoms as best we can for as long as we can

And then if/when the symptoms can no longer be managed, hope we have given Logan’s bone marrow and organ function enough time to recover and she is strong enough to

B. Apply for a new chemotherapy study that has come available. (Loggie currently doesn’t meet requirements and to be honest we have to be careful not to do more harm than good and its still not a cure but at least something…..🤞🏻🤞🏻)

“Now what?” I asked Juliette…… “How long will we get before this new cocktail of medications doesn’t work anymore? Hours? Months? Weeks? Years??” I sounded desperate.

“I don’t know…” was her reply.

IMG_1885

So here we are…. Stuck in ‘I don’t know’ land.
Not knowing how long we have until we are in full blown trauma again, not knowing when our life is going to be turned upside down- or even right side up🙄. Not knowing if we will need to try chemo again soon or if chemo will ever even be an option again.

We are wedged between a rock and a hard place and we don’t know what the hell is the right thing is to do is our BUT  here is what we’ve decided to TO do.

We’ve decided to do Epic shit.

IMG_8761

We’ve decided to add this uncertainty to our ‘fuck it’ list and attempt to have another adventure.

Jared is now officially unemployed. Yes, it is scary and it totally sucks but it happened and it is what it is. Maybe he should do what every other logical person would do and find a new job right away, but he’s not going to.

Logan has brain cancer and hasn’t responded to treatment the way we hoped. Yes, it scary and it totally sucks and maybe we should do the responsible thing and stick close to the hospital and worry and wait for the next ball to drop but we aren’t going to.

Brody longs for normalcy and routine and he can’t have it. Yes, it is sad and it sucks but the reality is nothing is ever going to be normal in his life. Maybe we should encourage him to finish grade 8 and play another season of lacrosse and maybe we should do our best to try to make his life as normal as possible, but we aren’t going to.

Instead, we’ve decided to take a break from the job interviews. We’ve pulled Brody out of school (thank goodness for a supportive school district and a smart kid. He’s finishing grade 8 with the straight A’s he currently has). I have learned how to access Logan’s port and give her an IV and the proper meds in a crisis.

We have dickered with insurance companies for coverage, and had long meetings with our doctors around ‘goals of care’, ‘fuck it’ lists, emergency medical situations and “what if’s.” Half of the doctors on our team think we are crazy and the other half have told us we are inspiring but the good part is, ALL of them have jumped on board and are supporting our plan and helping it become a reality

So, yes, we are running away.

IMG_5929

LIFE ALL OVER THE MAP—amped up version.

How long are we going for?????? We don’t know.

Where are we going? We don’t know. We have a loose plan (which we’ve thrown together in the last couple weeks) but we aren’t really sure…. (Mexico? Belize? Nicaragua? Costa Rica? Peru? Columbia? Panama?——any suggestions- cheap and awesome, and safe, preferably with kick ass almost free health care😉????)

We have another MRI loosely scheduled for the end of May. So for now, our plan is come home then and re-evaluate. Maybe coming home at the end of May will be a pit stop or maybe we will be home next week before our adventure even gets a chance to start….

Who knows….
We sure don’t, and we aren’t clear if this is the right thing to do but we are going to TRY anyhow.

In the words of my fave author, Danielle Laporte “You can be scared, and really, really ready.”

Hells ya….

I am sure there will be some of you who will judge us for this decision. (Believe me there is NOTHING you can say I haven’t already said to myself🤪) There will be some of you who won’t think this is a very good idea and some of you who will throw down opinions around like experts about what you think we should do.

I get it, I really do, but the thing is, you never know what you should do or what the right  thing is for YOU until you are faced with a situation. This might not be what you’d do… in our shoes…..but its what we are doing and we hope its awesome.

If it isn’t, we will listen to all the “I told you so’s” when we get back. For now we don’t want to hear it.

We may not have a lot of time left for adventure or travel. The whole family wants to do this.

Logan’s latest setbacks have amped up a new level of fear and stress and we have never felt more unsure about what our life will look like down the road. Yes, it may be too hard to be away and we may get where we are going and turn around and come straight back. We know there will be challenges and its not going to be easy and perfect.

The point is despite our fear, we are going to do it any way.

We look at our life differently now than we ever have. Recently our life has been a series of bullshit and shitty circumstances. Because of this, we could give ourselves permission to sit around and feel sorry for ourselves. We could wallow in self pity and sadness or we can make a choice….

To look at the time we’ve been given as an opportunity and a gift.✈️

Jared is jobless, but he now has time.  Brody can leave school and not miss at thing and start grade 9 fresh and without consequence. Logan is off chemo, and we’ve got her meds somewhat levelled out and I am now trained and capable of being a nurse/mom on the road. I have been given an amazing opportunity to write a book and even if this adventure doesn’t fill the pages but instead drains all our funds, we will be attempting to fill our hearts and our accounts with something much more valuable than money.

We will have memories and experiences, none of which can never be taken away. Not by cancer and not by an uncertain life.

So I pose the question, is it really that crazy for us to go on this adventure or is it more crazy for us to stay home?

We leave in a few days- First stop Mexico (close enough to home, with a couple of nurses we know in the area, and a jumping off point we are familiar with to get comfortable with being on the road and see how Loggie adjusts)

This may seem nuts……We know it, but we are doing it anyhow.

This isn’t about a bucket list or tick marks, (ok, maybe it kind of is 😘) but rather it about our own ‘fuck it’ list. Fuck it- meaning- why bother trying so hard to keep things normal. Fuck it meaning to hell with being afraid of what could happen anymore (when most of what we fear already has) Fuck it- meaning- lets just trust it will all work out….(I really love the versatility of this word)

I mean what really matters NOW???

We’ve spent the past 13 years trying to hold on to a life we hoped would turn out a certain way. We’ve spent more time that I’d like to admit wishing for cancer to end, or praying for the strength to get over it so we could move on and live the life we’ve always wanted. A life just like everyone else’s.

But, the thing is, NOW feels like crunch time and we are clear. This life is never going to measure up to what we had planned for it to be. We can’t grasp onto a false image of reality anymore. We are in a place where we’ve lost almost everything we’ve worked for and desperately tried to hold onto, and now we aren’t afraid of losing anymore.

Now, the only fear we have is regret.

Travel has always been a passion for our family.

  • Rome 2014
  • Croatia
  • Hawaii 2008
  • Portugal is the bomb!
  • Cambodia
  • Asia

We run away to find ourselves.

We run away to connect to humanity and to each other.

We run away because life is so much easier when we aren’t trying to live it the same way as every one else.

We run away because cancer doesn’t seem to have as much power on the road.

We run away because we don’t know what else to do.

So, off we go….

We will keep you posted.

We will update and share our adventures through our Facebook, Instagram and You Tube channel. I promise I will blog when I can (in between working on the book😉)

We hope you will join us on this journey. We hope you will root for us, and we hope you will wish us only goodness and the adventure of a life time…..

We also hope you know someone who might hook us a high paying job when we get back…. Hahaha! 😉

Carpe Diem,

J

 

Facebooktwitterpinterestlinkedin

New year, no plan

It’s a weird place to be to be in, but here we are.

It is a new year and we have no plan.

We are all home together. No chemo schedule and no lingering work or projects. Time is standing still and although every day seems to be the same shit, there is also a weird pause in the madness giving us all some much needed respite.

Bdog seems to be the only one who has any real obligations on his calendar and we joke how we are all living vicariously through the normalcy of his life.

Each of us are doing our best to take this time and use it to exhale and relieve some of the stress that has literally paralyzed us for the past two months.

It has been such a shit show and we’ve been left reeling.

Things have been extreme in both goodness and terror and the ying/yang of it all has thrown us for one hell of a loop.

Wrapping our heads around where we are at, while trying to get our thoughts and lives sorted seems daunting. How do you begin to map out what to do, when you don’t have direction or a plan and all you can do is fear what the F is coming down the pipe?

IMG_0773

We are living on the brink. No one is willing to crack but it hasn’t been easy to accept any of this. We feel like we aren’t doing enough. We aren’t enough. We haven’t thanked all of you enough, we aren’t worthy enough, we haven’t figured out enough of a plan to save Loggie.

We aren’t saying much to each other on the outside but I know on the inside, our minds are all spinning.

Surrender is hard. Accepting circumstances for what they are and meeting yourself where you are is a hell of a job.

It is so easy to beat yourself up for not meeting your own expectations or feeling enough when you measure your life and realize you are so fucking far from where you want to be. Coupled with the realization that you are going to have to give up control and expectation and just be—— well, holy shit.

Insert anxiety.

E21E7EBF-5AF8-4849-B3E2-1CCDE0F90ED1

If you are someone like me, the constant desire to control is ever present. I am type A. I like getting shit sorted. I relish in the idea of getting to the bottom of things. All I want is for Logan to get better and I want a clear knowing of what our life is going to look like. Is that really too much to ask? (Insert sarcasm😉)

Even though this past year and half has been hard and I have loathed that I didn’t have any control over our life because it was filled with crazy chemo schedules and terrible routines, I realized that having some plan, any plan, is so much easier than having no plan at all.

I am desperate to let go and try to find the strength to trust the process but it is the fucking hardest thing I’ve ever had to do.

Trusting is so hard, and the realization that everything in this life is actually almost, always out of our control has been sobering to me. We really have zero say in what life serves us up, the only true freedom we have is our ability to choose our response ~ Whoa.😳

As an amazing cancer survivor, who also lost her husband to cancer (WTF??) recently wrote to me “There are no what if’s, there is only what is.”

How profound is the realization that in order to have peace we need to accept where we are at. This is it, and no amount of fear or anger or anxiety or control is going to change what will be. None.

“Surrender. Lean into it. Focus on the what is.” I try to calm the urge to combust so many times each day

My yoga teacher gave me a mantra to chant. “Om, gun ganapataya, nama ha”

It’s directed at Ganesh, the elephant-headed god and one of the most worshiped deities in the Hindu faith. He’s known as the remover of obstacles and he’s in charge of bringing new beginnings.

A169D7C2-B0C3-4A48-B423-FB243FF8DEE7

Basically, he removes the bullshit and clears space. Jared laughs at me as I scream the mantra out several times a day, almost begging to be heard.

We’ve just come through one of the worst times of our lives, barely.

9ACBE006-3834-46BD-9026-04277760CFB4

For nine weeks straight Logan vomited, cried in pain and weakened. She lost way too much weight, she grew pale and we spent more days in the hospital than I would like to remember. There were days when she didn’t know what was happening around her and there were even days when her mind failed her and she didn’t even know who I was. We were in full-blown trauma for weeks on end and we all feared the worst.

No one could figure out what was happening. Her oncologist was baffled. The thing is, we reduced what would be her final chemo dose in November and all hell broke loose.

This shouldn’t have happened.

We were convinced the tumor had to be growing. She was dying. We could feel it in our bones. Even Logan told me she wouldn’t make until the end of January. The conversations became very heavy and dark. She gave me a list of people she wanted to be with her as she crossed over. She started to write a letter to her brother. She apologized for not being strong enough to get better and she cried as she told us that she was happy we could finally be free of her cancer.

We did a lot of crying and although our life was in total distress something else very magical was happening around us.

We were being lifted up and despite feeling broken we had an entire community rallying around us that wouldn’t let us shatter.

“Don’t worry, we will carry you….” The messages flowed in and with it came cash and meals, and gifts galore and some of the most powerful and deep love we have ever felt.

We’d wake up each morning (after almost zero sleep) feeling desperate and by the end of the day there was so much goodness and kindness that had found its way to us, we felt strong.

This slideshow requires JavaScript.

We were completely torn.

How could this be some of the best and the worst times of our life all at once?

We met with our team of caregivers and discussed our goals of care with the hospice team. One of the hardest conversations I’ve ever had, yet so clear and freeing.

Our number one goal was to figure out a plan so we could spend as little time as possible in the hospital and as much time as we could together in our own space surrounded by our own tribe.

It was clear Logan was shutting down and giving her anymore treatment was likely going to kill her. We had to make a choice. We decided not to give her the final doses of the chemotherapy and let go of finishing the full protocol we signed up for nearly fourteen months prior.

We did an emergency MRI to be sure there wasn’t further spread of the disease and when we saw some minor improvements we cried because although we knew the chemo was in fact helping her cancer we also knew, it was hurting her whole body even more.

Out of desperation we started working with an acupuncturist numerous times a week. We spent countless weeks juggling new medications, and trying new vitamins and diets, and essential oil therapies. We surrendered to being forced to sedate her when things got too bad, we cleaned up vomit, cried our faces off, blocked out the bullies, and chatted endlessly and intimately with friends, family, nurses, hospice and healers, and basically in the end we decided it was time to give in and let go.

553AF9BC-71D9-4CE3-8427-657B319B556A

Jared finished working and as a family we prepared to make her comfortable and take this time together to figure out and learn what letting go actually meant.

And now here we are……

Weeks have passed since Logan has had her last dose of chemo and I’m pretty sure she won’t be dead by next week. 😉❤️🙌🏻

In fact, she seems to be turning a very small corner and although she has a LONG way to go she is a bit stronger each day. ❤️

Now as we look back we feel clear. With less emotion and panic, we realize it was true, the last dose of chemotherapy  almost killed her.

Her system was shutting down and her body was telling us it was way too much. She’s had more than 300 lifetime doses of chemo and she’s far to fragile to handle any more right now.

Sadly, what really sucks is that she still has so many symptoms that are related to her tumor and each are a reminder of what we hate to be true. The chemo didn’t cure the cancer.

It has shrunk it in a few spots but not nearly enough to reverse all the effects or her deterioration.

Her blood pressure is still very much all over the map. Some days she’s strong and clear and other days she still pukes her guts out and we can’t even understand what she is trying to say. A tumor in the brainstem affects so many vital functions and even though hers didn’t look worse in November, it is wreaking total havoc at the size it is at.

So now what?

Well that is a big fucking question isn’t it?

Basically we don’t know.

99F07618-D5CD-4ECF-A63F-721367CD4FC8

Our acupuncturist thinks we need to take an approach of allowing her prana/chi and life force some time to return to her body before we knock her down anymore. He believes we need to nurture her mind, body and soul and start to heal her from the inside out.

On some level our oncologist agrees. More chemo might kill her but so will the cancer sooner or later. We are caught between a rock and a hard place.

We know we were on a roll at one point and the tumor was shrinking and her symptoms were improving with treatment, so stopping treatment will likely mean only one thing.

I don’t like to assume but honestly, this is an educated guess based on the fact that after 4 rounds of trying to beat this cancer, it keeps coming back.

There so much fear around not doing anything. There is so much fear around surrender and allowing time for recovery and healing not just for Loggie but for all of us. We all need time to recover, but feel like we aren’t doing anything if we aren’t doing something.

We feel like we are giving up and we feel like we are failing.

Fuck.

1ECCED1E-E728-4E2C-9D2E-C4A0ACF28D38

There is an option to try another type of chemo on a study but we don’t know if it is the best thing to do. Apparently just because you can, doesn’t mean you should.

This ‘maybe’ chemo, has a bit of a different approach, one drug blasts the tumor cells and the other drug cuts off the blood flow to the tumor. It’s a fairly new regimen and the results are promising but the treatment is long and hellish and not curative.

Nothing is curative at this point so we wonder, do we advocate to hit her with more poison right now while we have momentum and the tumor is shrinking?  Will this be her her best chance at a longer survival? Or do we wait to see if this bloody thing will stabilize and give her some time to heal and get stronger and this will be her best chance at a longer survival?

We don’t know what the right thing to do is, and we have more questions than answers at this point, likely because there is no right choice anymore. There is no clear path; there is no ‘what if’s’- there is only ‘what is’.

IMG_9679

I am currently researching all natural therapies, we are doing yoga, and we are all taking this time to focusing on what we each need right now. We all have our own resentment and anger and fear we need to move through. We are ‘in search of’ the answers and are open to whatever the universe serves up.

519D01D5-DDE3-4276-A113-FCBD34945395

Jared has doing cross-fit like a maniac trying to get rid of his stress (on a good note abs are a win, win) 🙌🏻 and Brody is happy to be home and is taking some comfort in the fact our life not being in constant turmoil.

Me, I am writing my way through this, drinking more tea and less wine and spending more time on the mat with my sweet girl. Life is about as normal as its going to get but, still, there is a weird feeling brewing just underneath this lull.

It is almost like something is about to boil over but we aren’t quite sure how to turn down the heat.

We don’t know how to navigate this new place of uncertainty. We don’t know how to enjoy this ‘quality of life’ and just be.

Because all we want to do- is do.

Anything, something……

We are coming to terms with the fact that we are not in control of any of this. It is far greater than us, and letting go of control has been hard and full of deep personal exploration.

We don’t know what is right, and we may never know, so we are focusing on doing whatever feels right for each of us in the moment.

For Logan, it is simple. She is coming to a place where she can engage again. This is a place, where she doesn’t feel like she might need to say goodbye every time she says hello. She is getting up out of bed on her own in the morning instead of needing to be helped. She’s eating real food again and not just fluid through the tube. She’s made it to a few yoga classes and on the good days she is actually taking less medications.

7A8F972E-0DFD-42C7-9F44-649E5FC5C5A0

E5607B68-4893-41A3-A638-F443B8542836

It’s one day at a time right now but the funny thing we are learning it has always one day at a time. It is weird how we’ve convinced ourselves to believe otherwise.

Right now there is no preparation, no real plan, no rush, just now- just what is.

On that note next week is MRI week again. We are setting our intentions and hoping is will give us a clearer picture (pardon the pun) of what feels the most right in our hearts and we will know what to do next.

Peace, ✌🏻❤️

J

 

Facebooktwitterpinterestlinkedin

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. 😳)

BCF53CE8-81D1-4892-BEFF-76C529B3723E

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.’

60F35784-1F94-4A99-99BD-E810681821C0

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. ❤️

4DFBDF63-AEBE-4BA0-B75D-347C48316962

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.

6BB537BF-F29B-4735-8AD5-1F7BD5F7286A

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.

B8293E46-C913-41F3-AF60-45479E721AA1

“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.

2F132053-F867-4FD1-9077-291A2DE06F00

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.

99F07618-D5CD-4ECF-A63F-721367CD4FC8

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.

4128C7F6-7779-465D-8957-487644662177

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

 

 

 

 

 

 

 

 

Facebooktwitterpinterestlinkedin

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.

9A7D3341-9D7D-4940-92B6-7B0F53812991

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.

FF910D3B-C1DA-465F-B10E-E438198D4687

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.

A9D16A91-4671-4F65-8923-AB2BA7951094
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.

5F995C2A-00E8-478B-B8F5-CD08FF442E3E

553AF9BC-71D9-4CE3-8427-657B319B556A

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!!!!

 

9ACBE006-3834-46BD-9026-04277760CFB4

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.

IMG_5702

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.

E919523A-C9DF-469A-A143-81D0C4815FC9

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

 

 

Facebooktwitterpinterestlinkedin

Living in Limbo

I am supposed to be sitting on a beach in Mexico today.

It is our 15 year wedding anniversary and it has been 13 years since The JayRod and I stole a week away.

Photo526932123097_inner_0-26-730-30-0-983-716-986

It has also been almost 13 years of childhood cancer. So, ‘couple time’ hasn’t really been a thing for us.

We knew booking a trip away wasn’t the best timing but Loggie’s oncologist encouraged us, and almost pushed us to take some time together.

“You and Jared are running on fumes. Every time I see you, I can tell you are breaking down. This situation is more than any one could handle and you really need to take some time away and recharge.”

She is right.

Jared and I have never felt exhaustion like this before. I feel like I am in a fog.

ALL.THE.TIME.
Overwhelmed.
Angry.
Frustrated.
Sad.
I have never ending hives and a dull headache that won’t go away. We don’t sleep. We aren’t eating properly. We are all feeling so depleted and we just want to shut down yet the only option is to keep going.

Juliette (our oncologist) agreed to adjust Logan’s chemo days to make sure she’d be on an ‘off’ week while we were away.

By doing so, she wasn’t supposed to need blood or platelets. We juggled schedules and changed dates so any tests she needed wouldn’t fall while we were away.

We pre ordered and organized medications, re-stocked feeding supplies, filled out special authority forms and worked on a full schedule of physiotherapy routines, blood work, and wrote detailed instructions of care for our family.

Then I went shopping and bought two new bikinis.

One whole week in the sunshine with my husband is desperately what I needed and although I felt guilty as fuck about going… (I mean really, what kind of parent actually goes on vacation when their kid is sick?!?) I knew we needed time to regroup.

After 13 years of not taking time out or taking care of each other, our love bucket has dwindled.

IMG_0768

I don’t write a lot about the toll this has taken on our marriage but to put it mildly it has stripped us of a lot.

How could it not?

We have zero time together, we are both running on fumes and our life is constant stress.
We are tired and caught up in blaming each other for not doing enough and life feels like a constant tally of who does more….

Jared has incredible pressure at work- his company does not appreciate the distraction (as they call it) of his personal situation and as with any sales position the pressure never comes off.

He works harder than any one I know. Sometimes staying up all night to finish projects so he has more time to help with Logan during the day. He’s the most committed employee and father and he does his absolute best to balance both but he can never do enough.

Despite all the variables in his industry contributing to a softer year, the focus is on Logan’s cancer and whether Jared can continue to do the job he’s been doing for more than a decade.

Because of this, he is making far less money this year and that makes him feel like he’s failing our family.

We both constantly feel like we are failing.

Logan is not getting better and everything about our life is getting harder.

IMG_0773

I fear what will be left of Jared and I when this is over.
I worry that I’ve spent so much time and focus caring for Logan over the past 12 1/2 years that I don’t have enough left to give Jared or Brody.

It tears me apart to think they may be all I have left and I know I have not spent enough time nurturing them.

We knew it was a risk booking this trip but our oncologist was right. Jared and I are functioning on total burn out.

15 months of giving twenty four hour care without one solid night’s sleep and in the words of Gord Downie, we are “Tired as Fuck.”

BUT…..with all that said…..

I am NOT sitting on a beach in Mexico today.

Because, once again Logan has taken a turn for the worse. Because cancer didn’t get the memo or give a shit about all our planning.

And because what the hell kind of a parent or person for that matter, leaves their child in a time of crisis to enjoy a selfish, relaxing and fun vacation when they are desperately needed?

Not me.

A vacation can always be rescheduled. (Even though you may lose a chunk of money 😩)

The feeling of abandonment and leaving your kid when they need you most is something you can never fix.

We just couldn’t do it.
We couldn’t leave Logan while she was this sick and we couldn’t put the stress of caring for her on anyone else.

It’s been a really shitty few weeks.

We’ve been hospitalized, run a zillion tests, and the consensus is despite treatment, Logan is regressing.

Her blood pressure has been ‘all over the map’. Her vomiting was out of control, she has hallucinated, and been off balance and dizzy. Her eyes are glazed over, she’s losing weight and she’s slurring her words.

Although we initially thought her MRI looked relatively stable, clearly the consensus is- she is not stable.

IMG_0642

We had a ‘team’ meeting yesterday to discuss our options.

It felt like the worst day of my life. (Although I have so many days like this I’m not sure which one, has really been the worst.)

Dr. Hukin started the meeting by telling us how sorry she was for where we were at- AGAIN.

She said she felt we were now stuck between a rock and a hard place and she really didn’t know what to do.

Not a good start to the meeting.

Basically, she thinks the chemo we are on has stopped working and one of the drugs may actually be causing more harm then good.

She told us she thinks we need to stop this treatment.

She showed us detailed pictures of Logan’s tumour. She explained that although it’s very hard to distinguish how much tumour there actually is, there are clearly areas that look better.

For months Logan was doing better so it’s safe to assume the chemo was working. Great news!

But unfortunately since she’s taken such a down turn it’s also safe to assume it’s not working anymore.

So now what?

Well, to be honest we don’t know.

There are a couple ‘limbo’ doses of chemo left we could give but we aren’t sure if there is any point.

Juliette is presenting her case at the Cancer Agency tumour board this week for a second opinion from the adult oncology world.

We talked about options.

They are very limited.

There is a fairly new chemo protocol that may be an option but we need special authority to see if she qualifies to get coverage through MSP.

We talked about a few clinical trials that are happening the US.

There are a couple of options but we’d need to do some more investigating. It would be very expensive and clinical trials are just that-a trial- a shot in the dark.
Our oncologist shared her thoughts…
Basically she told us she’d try to find the least expensive options but it is usually a fight to get MSP coverage for these types of trials and she suggested bankruptcy for very little possibility may not be what’s best for our family.

The question arose…how far do we want to take this? How much more do we want to put Logan through? How much more can she withstand and what does she want?

Then we talked about stopping treatment all together and letting the disease run its course.

The thought being maybe without chemo, Logan’s ‘quality of life’ (whatever that is) may improve and she could enjoy some time stronger.

The MRI looks stable(ish) but she is in crisis. Her system is in automatic failure.

There is no question whether the tumour will likely start growing again off treatment. The only question is when?

Could we take her off treatment and then give her 3 months to get stronger? 6 months?
Or will she only get worse and regress further and more quickly without chemo?

We don’t know and the risks of doing so are high. It’s like rolling the dice and putting your whole life on red.

But, cancer is not her only issue. Her whole body is struggling. She is needing so many blood transfusions and giving these to her so regularly comes with its own set of problems. Her bone marrow is tired. Her kidneys and liver are over worked, and her lungs are damaged.

IMG_0758

How much more can she take?
How much more can we take?

We left the meeting in limbo.
We agreed to an intake at Canuck place (don’t even get started on how we feel about this…) and we will start working with their team for medical support and some respite care. I hate the idea of moving Loggie into the hospice world and again I feel like such a failure.

This week has been hell.

Nothing is good- nothing is working in our favour- everywhere we turn we feel like we being kicked in the gut. (Screw you-CRA as well 😉)

We are trying our best to stay positive- and not dwell on all the shit.

We are doing what we can to find moments of gratitude- (fuck you universe) and we are holding out for the desperate hope of better days.

Collectively we have cried a million tears and we’ve had the hard conversations around what dying might look like.

Logan says she isn’t ready.

She says she has too many people she loves and she’s not ready to leave us yet.

Today she picked up her hand weight for the first time in months. She put on her compression stockings and she’s forcing herself to eat.

We are back at square one and it totally sucks but all we can do is keep going and #rollwithit.

So today, well- fuck it- I’m supposed to be in Mexico- So I’ve decided to make a big jug of margaritas, mix up some salsa, crank up the heat in the house, throw on my new bikini and celebrate 15 years of NOT getting a divorce with my love. Cancer hasn’t taken everything from us and today it can F right off.❤️

IMG_0689

Facebooktwitterpinterestlinkedin

Dodging bullets

Jared says having a kid with cancer feels like trying to live while having a gun pointed directly at you.

The revolver has six chambers with three bullets loaded into it and every once in a while the gunman pulls the trigger.

You pray to hear the click.

You pray if the trigger gets pulled and a bullet is released you will be quick enough to dodge it.

I feel like all we’ve been doing this week is dodging bullets.

Logan has not been well and for lack of better words, it has scared the shit out of us.

She is two weeks post chemo and has been feeling pretty rough since we gave her treatment. Some weird symptoms had started before chemotherapy and since she was progressively getting worse as the days ticked by we chopped it up to side effects of treatment.

But as the days passed and the chemo should have have moved through her system and she wasn’t getting better we feared something else was very wrong.

I should have knocked on wood when I said I didn’t want to be in the hospital the first week it opened because here we are.

IMG_0633

Nausea, vomiting and a sudden high blood pressure (what!?!? her problem is usually very low BP’s 😳) had us worried. So, despite knowing opening week was going to be a gong show I was forced to bring her in.

She hadn’t slept for 3 days (despite meds to try to force her) when the hallucinations started.

“Do you want to get matching outfits with your boyfriend?” She asked me.

I gasped.

“Do you know who I am?”

She was puzzled and disoriented “You aren’t Tayler are you?”

I started to cry.

“No Loggie, I am not Tayler, I am your mom.”

It didn’t phase her.

She was so confused.

She proceeded to tell me we couldn’t park our car in the spot we were currently in because Brody hadn’t put any money in the meter yet.

We were still in her bed.

I panicked.

Immediately, I called the oncologist on call and we were admitted. (More or less this is how it went down- I’m going to leave out all the drama of getting admitted to the new hospital on the first day or sleeping on the emergency room floor- or having a new nurse who couldn’t access a port or finally getting into a room after almost 24 hours to find the door wasn’t hung properly and didn’t close. Let’s just say the new hosptial is shiny and new and a total upgrade- which it absolutely is. 🙄😉)

IMG_0663

We ran the full gamut of ‘to be expected’ tests and then added a slew of new ones just to be sure.

Check her kidneys ✔️
Check her liver✔️
EKG to check her heart ✔️
EEG to make sure she wasn’t having seizures✔️
Cortisol test ✔️
Meeting with endocrinology team✔️
Consult with cardiology✔️
Blood cultures✔️
Urine test ✔️
Two bags of blood ✔️
IV fluids✔️
New anti-nausea medication regimens✔️
Full neurological exam✔️

Nothing improved, but nothing stood out.

IMG_0673

We needed an MRI but the new machines weren’t available or up and running at full capacity.

Thank goodness our oncologist is ‘Bobby Big Wheels’ around here.

She ordered the scan as an emergency and we were admitted as the first patient to stay in room 116 on the new 8th floor of BC Children’s hosptial while we waited.

We were greeted in the clean and cheery new space by our favorite, familiar, yet totally frazzled nurses (it’s been a week of growing pains for everyone). We were given a handmade quilt covered with owls as a gift.
It made us smile.
How fitting for the ‘wise’ ol’ veterans we are. 😉

IMG_0676

Twelve and a half years, 3 oncology clinics and 2 hospitals later, so much has changed- except for one thing.

Cancer.

Cancer has stayed the same. It has always been relentless, nagging and such a damn dictator. I guess it didn’t get the memo that it was supposed to get a fresh, clean and cheery overhaul along with the new space.

IMG_0662

We finally had our MRI in the fancy updated machine and after a few hours we got the results. Waiting for them was physically painful. I broke out in hives.

My nurse came to visit- our doctor- and the ward doctor. We talked about the possibility of shitty results and collectively shed a few tears.

Based on Logan’s symptoms we were all absolutely sure the scan was going to come back confirming our biggest fears- We were sure today would be the day we faced a bullet we couldn’t dodge and we wouldn’t hear a click.

Loggie was clearly agitated and worried about the results so I talked to her about the ‘what if’s’

Brody had a total breakdown and told me he hated this life and how he never feels happy anymore. Then he bawled his face off and told us how sorry he was for even having his feelings.

Jared and I snapped at each other- it’s been 15 years of marriage this week and almost 13 years of cancer. Just so you know, it takes a hell of toll on the partnership (another blog)

What is next? How will we get through it?

We all wondered and tried to prepare for the worst.

“Be strong. Don’t fall apart. #rollwithit” my inner voice was on repeat.

We started talking about an invasive and super risky surgery and clinical trials showing promise (for a mere $400,000😩) in Alabama when Dr Elaine reminded us not to futurize too much.

Dr. Elaine is the ward doctor in oncology and the sweetest person you’ve ever met. She literally is. Her voice is soft and her energy is so loving and compassionate.

img_2899

After she left the room and considered our conversation she came back to apologize for using the term ‘furturizing’ (which I’m not even sure is a real word)

“I thought about it,” she said “I futurize all the time and I don’t even have close to what you have going on. It probably wasn’t a very compassionate thing to say.”

I told her how I loved her word and how it jolted me back to the moment. Exactly where I needed to be.
It was the right word. It was what I needed her to say. I told her I appreciated how she intuitively knows how to navigate this unknown territory and how she is doing a great job even when she is unsure.

Then I shared with her how Logan had told me she was realizing her own limits and how she was also futurizing.

“We all do it” I told her “Even when it’s not helpful.”

I realized how ‘futurizing’ although not always helpful can give us the tools to prepare for the unknown and give us the courage and permission to express our personal wishes.

“I’ll do whatever they want me to do Mom. I’ll even attempt the surgery if it is my only hope.”

Logan paused and looked directly at me….

“Unless the doctor tells me there is a good chance I will wake up paralyzed. I really don’t want to live like that.”

Then she started to cry. (Which almost never happens)

“Mom, I want you to know, I’ll suffer through almost anything but if I have to be stuck in my body and can’t move and you and Dad and Brody have to take care of me like that, I want you to know I’d rather you just let me die.”

Elaine and I both cried at the thought.

“I just don’t want this for you guys.” She said.

The most compassionate words she could have ever said is exactly how I feel.

We can’t change the way things are in our lives but I just don’t want any of this for us either.

IMG_0680

Anyhow…..

Thankfully the MRI came back and jolted us out of our slump. Preliminary results show the tumour looks stable.

Phew…..😩😩😩😩😩

They reminded us these results are preliminary and they need some time to do a full assessment and comparison. They need to really look at the scans if they want to be 100% certain but the initial impression is there doesn’t seem to be a dramatic change in the pictures.

You have to understand, Logan’s tumour is not growing as a solid lump but rather crocheting it’s fibres through healthy and damaged tissue.

Without physically cutting her open and looking at what’s going on all we can do is compare her scans when in reality we (or even the best doctors) aren’t really sure what we are looking at.

A slight change which could never be measured on an MRI could cause a big change in Loggie because of the crucial area in her brain where the tumour is infiltrating.

We’ve been told to remember the picture is one thing- clinically how Loggie is doing is most important and how we measure progress.

They asked us to give them a bit more time to have the scans reviewed and the option of having few more doctor’s opinions weighing in before giving us the final report BUT the good news is there is no new lump in another area of the brain which is what I think we all feared the most.

Bullet dodged.

This means we should feel better and somewhat relieved but simply put- we don’t.

Probably because this sudden setback has been a reminder of what we know is coming down the barrel.

It is a reminder of the hell we likely face soon and how valuable and limited our time together is.

It has awakened us once again to how quickly things can change and how hard this is on each of us not just Loggie.

Childhood cancer is a family disease.

It has also reminded us that the gunman still has his finger on the trigger.

IMG_0681

The toll cancer is taking on Logan’s body and each of our souls feels unbearable at times.

The ups and downs- the fear and hope- the going from the worst case scenario back to accepting our current reality as good enough is hard and unfair and exhausting.

But it’s also all we’ve got. (#rollwithit 😩)

I told Logan I don’t want to live without her and that is my absolute truth. So with those words comes the responsibility to accept where she is at and all that comes along the bullshit- that is cancer.

The plan is we will spend another day here getting more IV top ups and we have a few more tests and assessments and meetings with doctors on Monday.

Logan’s vomiting is now under control and we are starting to see some low blood pressures returning. 🙌🏻🙌🏻

She’s getting extra fluids and electrolytes and we’ve started a new medication for sleep and nausea. She’s improving and it seems her system is being reset.

This ride on the emotional rollercoaster seems to be returning to the station and we can’t wait to jump off.

It’s hard to live like this.

It’s hard to face the fear that at any moment the trigger could be pulled and we won’t be lucky enough to hear the click.

It is hard to know whether we should be relieved or happy or content because we dodged a bullet today or terrified and fearful because we know there is another bullet in the revolver and the gunman relentlessly continues to point that f’ing barrel directly at our life EVERY. SINGLE. DAY.😢 ❤️

Facebooktwitterpinterestlinkedin

How much it hurts

 

The thing about trying to live through cancer with our heads held high, is we spend so much time rising above that we disconnect from being on the ground.

When your life is cancer, (as much as we try to pretend it’s not) you constantly have to make a choice.
Allow it to break you or allow it to be a catalyst for strength.

IMG_9064

Period.

To choose the latter and walk the road of courage and bravery means practicing the very thing we fear the most.

Disconnection.

Ironically, being strong means you have to find a way to protect yourself from the hurt, fear, sadness and reality.

It means not letting yourself go ‘there’.

It means making a conscious decision to know when to shut down and turn a blind eye.

It means building a hard shell around your soft heart and not allowing the pain to penetrate.

We may try to call it ‘self care’ but let’s be honest, it is protection mode. Those of us who have a child with cancer, or who are living with cancer ourselves, know it well-

Disconnection is full blown survival.

It’s how the unfathomable becomes tolerable.

Honestly, I see the whole world in a state of disconnection right now. We listen, we see and we process all that we know deep down is unacceptable but we don’t allow ourselves to feel it.

IMG_0263

We don’t feel it, because feeling things has become so sacred and protected that we fear what our own emotion will bring. We don’t feel it because so much of what’s going on is wrong and we don’t think we can change any of it. We don’t feel it because we’ve been told weakness is not valued.

We fear feeling when we think nothing will change so simply put we file away our pain, outrage, anger and fear and we do our best to stay strong and be positive.

Trust me, I get it. I live it everyday. We yearn to be uplifted because so many of us struggle to accept this life for what it is.

Then, the unthinkable happens and someone we love dies.

It’s over.

There is no more rational. There is no more protection mode. There is no more rising above and all that is left is the overwhelming sense that we wish we have felt it all so much more and connected at a deeper level.

I struggle with this.

I know it’s ok to not want to ride everyone else’s rollercoaster. I know I have enough on my plate. I know I can’t take it ‘all’ on.

I tell myself this every day. It makes sense.

But then someone dies.

Today it was Gord Downie. Of course, I didn’t know him personally (although I wish and feel like I did). Seven years ago today, it was a sweet little boy we cherished named Callum. There have been countless beautiful souls we’ve loved and lost and tomorrow, sadly,  it will be someone else, maybe our Loggie. Maybe even you or me.

IMG_0431

The thing is, we can’t stop the pain. We can’t not feel things and hope we become stronger or at the very least, stay strong.

For it is the feeling and the connection and the grief and the outrage and the joy and bliss and sadness and the pain the makes us the imperfect, beautiful, capable and loving human beings we are.

I cried to hear our country lost someone we love. I cried even harder when I watched our Prime Minister speak  “I really wanted to keep it together but it’s just too hard because this really hurts.”

Yes, It fucking hurts.

It hurts in the gut. It hurts in the heart chakra. It hurts in the future and even though we may have tried to bury it, it hurt in the past.

IMG_9413

We know hurt because it bubbles up from the depth of our souls and the lump situates itself like a boulder in our throats- ironically where the words and the feelings need to flow from.

The lump is like a fucking dam.

It blocks. We swallow it down. We appreciate composure. We long for it. We honour strength and resilience and courage. We strive to have it all together.

But, getting gritting and deep and feeling all the BS and accepting it for what it is and then being ‘strong’ enough to release it when we are ready- is far more powerful and healing than just avoiding it altogether.

Listen, I am not advocating we all become soft and whiney and negative.

This is not about that.

I don’t think we need to wear our emotion on our cuff all time (maybe, just a little more some of the time) and I certainly don’t think this gives you a pass to be a needy, complainer or snotty mess.

But here is a thought….

Every once in a while, give your feelings permission- some space to marinate-and then, when you need to, allow those feelings to blow right through the fucking dam because sometimes, on days like today, it really does hurt too much to hold it all back.

No dress rehearsal- This is our life. ❤️

IMG_0436

 

 

 

 

 

Facebooktwitterpinterestlinkedin

Thanksgiving minus the thanks

I woke up this morning and reached for my journal.

I felt annoyed.

Most mornings, I try to write something. Always two pages of whatever comes up- never any pressure- I just write what’s on my mind.

Today, however, I woke up and consciously decided to write about what I was grateful for.

It’s Thanksgiving and it felt like the right thing to do. I have seen the gratitude posts hitting social media. I have also been reflecting on a few books I’ve recently read with some very poignant information.

Apparently, gratitude is the birthplace of joy so I sat on the edge of my bed, pen in hand, and pondered what I should write.

I felt nothing.

Not one word of thankfulness flowed to paper.

I looked out the window. It was raining. 🙄

I put my journal down and decided today wasn’t the day for bullshit.

I simply wrote “Fuck it” on the top of the page and started my day.

This familiar feeling of a lack of gratitude has been weighing on me for sometime.

I can’t shake it but I am afraid to share it or give it a name.

It is elusive. It comes and goes.

One moment I am feeling hopeful, happy, loved and balanced and the next I want to throat punch someone for cutting me off in traffic. It is like the swing of a pendulum from #rollwithit to #fml

I don’t know if it because we just had a full moon or because I turned another year older and feel in limbo or because it is Thanksgiving. I imagine it has something to do with the fact we are fast approaching the one-year anniversary of Logan’s relapse and I worry she is regressing. After 12 years, I am absolutely exhausted and with no end in sight I fear I won’t find the capacity I need to be what every one else needs from me.

All of it.

Maybe, all of it is why I feel so damn ungrateful.

In an effort to speak truth to bullshit, I am going to own mine.

This Thanksgiving I am not going to post about how lucky I am or for all the things I SHOULD be thankful for because I feel like doing so when I’m not truly feelin’ it is being bogus and insincere.

Instead I am going to share with you my ungrateful Thanksgiving list in the hopes of letting shit go and freeing up space to let more of the good flow in.

Don’t get me wrong, I am not a total jerk and if you’ve been following this blog you do know deep down I realize and acknowledge how much I have to be happy for. I am blessed with a warm home, healthcare, food in the fridge, a free country- a slew of second chances , my kid has great doctors, we have cool experiences and I lap all of it up.

I know I am lucky and I truly don’t take the good in my life for granted.

But this isn’t about that.

This is about being honest and not trying to put on a brave face when really just below the surface I feel a very sharp edge of dissatisfaction towards life- right now. Not as a whole- but certain parts of it and I am tired of generalizing my gratitude when really some stuff just sucks.

Sometimes, I think we fear sharing our hard days or our pain because we’ve been told that being negative is weak.

No one wants to hear it.

I am a full time caregiver and it is my job to lift everyone else up but being positive and thankful during times of struggle is hard work and a ton of pressure.

It got me thinking.

I wonder how many others don’t feel super grateful this year but struggle because they think they SHOULD?

I think of all the families of the Las Vegas massacre. I am sure they must also be caught in the paradox of feeling love and sadness, humanity and loneliness, anger and joy.

I think of the mom I just spoke to in the hallway who told me there is no options left for her child and they aren’t sure how many days they have left, or the mom who just introduced herself to me and shared with me her child story’s of relapsed after 6 years and how her whole family is living in two bedrooms as her son recovers from a bone marrow transplant.

Do they feel only gratitude this Thanksgiving? (Don’t get me wrong I am not claiming to know how they feel-but rather asking the question and suggesting if they don’t…its ok)

Life is really hard and this world is a mess and I believe unless we acknowledge the truth and speak our own personal truth to all the bullshit that surrounds us we can’t feel true gratitude and joy.

We were admitted today.

Thanksgiving weekend and I had a whole slew of plans and now we are in the hospital. Logan’s blood pressure was frighteningly low and she was feeling awful. Nothing we could do but come in.


She is now hooked up to blood and IV fluids and Jared is at home making brine and organizing dinner for tomorrow. For a control freak like me, you can only imagine what that feels like. The plan is to go home to spend tomorrow enjoying the festivities then come back in on Monday. This weekend has turned into a transfusion turkey sandwich of sorts.

The smart thing to do would have been to cancel dinner with our surrogate family tomorrow night but I don’t want to. First off I love them and I know sitting around the table in their company will bring comfort and happiness. Second the fear of this possibly being our last Thanksgiving together won’t allow me to forgo the attempt at tradition. Yet not being able to putter and set my table and clean my house and enjoy the weekend and the process of Thanksgiving has left me feeling irritated and almost angry. Don’t sweat the small stuff, right?

I get it. It is not about the table or the meal. I know. I fucking get it.

The thing is, its not always that easy to let it go. It might seem like small stuff but small stuff adds up and is usually the stuff that eats away at you and wears you down when are busy dealing with the big shit. It’s not easy to always have to accept harsh realities that are out of your control.

I’ve hummed and hawed about writing this blog but decided the only way to let go of my bitterness is to share it, release it and move on.

I decided this year instead of writing down what I am super grateful for and burying how I am really feeling, I would write a Thankless Thanksgiving list and share what I hope will F right the heck off!!!

Elizabeth Gilbert shared this quote on a podcast I listened to last week. “Sometimes you have to let your negative emotions transform into positive action.”

So, here goes my attempt….

I am not grateful for cancer. It is such a jerk and it pisses me off. Cancer is a bully and a taker and it never plays by the rules. I am not grateful for the hurt and pain it causes and I am NOT grateful for always having to live in such uncertainty.

I am not grateful for mortgage rate increases. Yep, we have to renew this week and I can’t believe banks are so greedy. Will I ever get ahead and not worry about finances? How will my kids ever afford to live in this city?

I am not grateful for guns and violence. This week’s news has rocked my soul. I can’t understand how there isn’t a radical movement for change and stricter gun laws and I fear for my kid’s future and the world I live in.

I am not grateful for those who don’t buy into global warming and I am not grateful for all of the natural disasters and the people who are suffering because of Mother Nature’s fury. It pains me to think of the hurt we are causing to  our beautiful planet and I fear we may not be able to fix what has been done.

I am not grateful for people who lack self-awareness and don’t think before they speak or ever stop to wonder how their actions make others feel.

I am not grateful I have such a lack of patience.

I am not grateful for spending so much time sitting in traffic or how my car is broken for a second time in 3 months.

I am not grateful for anxiety or fear and worry or this view.

I am not grateful for the lack of time I have to do the things I really want to do or be with the people I want to be with.

I am not grateful for people who do less than they should.

I am not grateful for spending the day in a freaking closet.

And I am not grateful my cel phone loses battery so quickly but lucky for you it does and this is the end of my post.

(Ironically I do feel a bit better- and more grateful. 😉🙄 Go figure)

So, tell me-if you feel the same-what are you ungrateful for this Thanksgiving?

Facebooktwitterpinterestlinkedin

I don’t know how you do it

The only comment I get more than ‘If there is anything I can do to help?’ is ‘I don’t know how you do ‘it’.

People often tell me how they don’t think they could do what I do and comment on how strong I am.
They tell me how if it were their child who was sick they would be emotional wrecks  and simply couldn’t cope.

“God, I’d be SUCH a mess…. I DON’T know how you function….I DON’T think I could do it…” (and yes all the capitalized words are emphasized in conversation)

I hear these words over and over again from very well intentioned folk.

I think people choose  words with the intention of giving credit and acknowledgement for the courage, capacity and strength it takes to care for a sick child.

But when it is worded like this, it makes me feel even more disconnected from the ‘normal’ people and the ‘normal’ world around me.

I usually walk away a little miffed and my irritated condescending inner voice kicks in.

“Yup, I guess you’d be an emotional basket case and I’m not because you love your kid more than me….” (insert 🙄)

I know this absolutely isn’t true. I get it, most of us associate dramatic emotion with deep love.

But honestly, what most people don’t understand is how the trauma and terror of cancer subsides.
I mean, I know our situation is shit but I have also come to know how once unfathomable things easily become a part of  daily life and reality.

‘Gloved up’ and giving chemo on the fly.

When people share how they could never do what I do, my reply is always the same “I really have no choice but to be strong and FYI you could do it too if you had to.”

I smile half-heartedly hoping they feel their words gave me some comfort and walk away after the awkward hug that almost always follows with a slight eye twitch.

“Nobody ‘gets’ me. Nobody ‘gets’ this.
Nobody knows what to say. Let it go Jenny….
Practice the 4 f’ing agreements. You know better, for god sakes, than to take anything personally…”

The other day I got a message from one of my India tribe members. She wanted to see how I was doing and rather than letting me BS my way through our exchange, she asked me a question.

“Tell me, how you are coping?” She asked. “What do you do to take care of yourself?”

It really got me thinking….

How the hell do I cope?

Why is it that I am not falling apart all the time? (Is there something wrong with me?)

Should I be I be concerned that I have become so exposed to shitty and hard situations that I don’t ‘feel’ anything anymore? Am I emotionally detached?

I do love wine and I joke about drinking too much but really, why have I not tipped over the edge and numbed myself into needing a sponsor?

I was deep in thought about it all while sitting in the oncology clinic waiting for Logan to get blood when it hit me.

The Canuck Place people had come to see a family we were sharing a room with and as I watched the two ladies approach the door my stomach lurched.

Logan has been doing pretty crappy for the past few weeks. She has new symptoms and because we lowered the dose of chemo of course we worry her tumour is growing.

We have been dodging our orientation into their program like a flying bullet. Juliette (our oncologist) wants us to utilize their resources. I was sure she sent them to see us.

As they approached the door I grabbed my cel phone to aimlessly scroll and avoid eye contact.

“I am going to lose my shit on Dr.Hukin for this….Oh, fuck, things ARE getting worse…..The tumour IS growing.” My thoughts immediately spiralled into panic mode.

When I finally worked up the courage to look up, the Canuck Place ladies flashed me an uncomfortable smile then panned over to the family sitting next to us and asked for privacy.

Immediately my stomached plummeted into deep and painful knots and I literally bolted.

The very first thought I had as I gave a look of compassion to the mom I left behind in the teen room was…

“I don’t know how you do it…..”

Fuck me.

How can I possibly loathe when people say these words to me yet the exact same words come to mind in uncomfortable situations?

I pondered this epiphany as I sat outside the door.

Compassion is such a complicated process.

It is so much easier to say “I don’t think I could cope with what you are coping with or I’d be a total mess ” and deflect the conversation than it is to feel the deep pain and emotion for someone else and be compassionate and empathetic and truthful.

Compassion is what we want to show others but is so fucking hard to do because it takes a lot of courage and vulnerability and to be honest most of us have never been taught how to be open. We don’t want to face the shitty parts of life or get thrown in the trenches.

For most of us, life is just too busy and stressful and it is hard enough to try to stay happy and content in our own worlds.

I get it.

But the truth is….

Shitty, hard things are always going to be a huge part of life and the more we avoid them the less connected, engaged and whole we feel in every aspect of life.

As I sat outside the door and waited for the hospice people to leave I felt the familiar feeling of the walls closing in on me. I felt the cries of the kids in the clinic piercing through my bones. I felt the tension of the parents bickering and the stress coming off the nurses who were trying to ‘help’ although they know all they are doing is ‘hurting’.

It all hit me like a ton of bricks.

We cope (or at least I do) most of the time by not letting myself ‘go there’

Denial.

Yep, the first step in the process of grief is personally where I chose to vibrate the most.

And I’m not talking about walking around with my head in the clouds like my kid doesn’t have cancer, but instead just chunking things down into the moment.

No big picture over here….

No looking too far ahead or thinking about all we’ve been though because it’s too fucking intense and when I do, I can’t breathe.

Anxiety comes on so strong, it is literally painful.

So, I just put one foot in front of the other and try to stay in the moment, every day.

Because I am not processing much around me, I also find I have very little focus and rarely remember much. Sorry in advance if you’ve had to remind me about something 27 times.
I’m not trying to be an asshole. I’m just coping 😉

I also cope by joking about things that are too heavy to actually face. It’s probably why I’m not clicking with the Canuck Place people- they are WAY too serious and quite frankly I’m not ready to go there yet.

Listen, I know none of this is funny but sometimes I feel like the only choice I have is to either to laugh or to cry.

I know you don’t always ‘get’ my humour and you don’t know how to take me. It’s ok- just know if I chose the latter emotion our interactions would likely be far more awkward than my stupid jokes about my bald kid.

Give it to me…

Oh and it’s ok to laugh with me….my inappropriateness is not contagious 😉

I cope by planning adventure.

Putting things on the calendar (planning a trip around the world) and keeping busy gives all four of us a sense purpose.

You might think it is absurd to learn how to change my kids feeding tube and talk about getting a five hundred dollar MRI in Ethiopia but this is OUR jam.

It is what we want to do.

Have experience and fun. Period.

We want to feel alive and do cool shit. We want to plan adventures and spend our time together daydreaming about those very adventures. The trips we’ve collectively taken to over 20 countries since Loggie has been diagnosed has been the very thread that has kept us going.

Seeing the world for all that it is- beauty and struggle- gives us hope. Getting lost together so we can find ourselves and reconnect outside of the bullshit has been the best thing we’ve ever done.

What makes my heart the most full. Traveling with these beauties!

It’s not for everyone and it’s not about running away from our problems. (Ok maybe it is, a little bit 🙄)

But it is NOT a bucket list.

We are not an race to check off seeing the Eiffel Tower or the pyramids in Egypt. Instead, we want to saunter around seeing the beauty in this world and feel alive.

Really, our circumstances have been difficult but we know life and humanity and the world as a whole is not terrible. It is amazing and awesome and here for us to experience and enjoy.

Throwing in the towel, blowing money we should be saving, quitting jobs and selling our stuff to traveling the world is our own version of a ‘fuckit’ list.

To you, it might not seem smart or responsible or right but again… that is why it we call it a ‘fuckit’ list.

I believe it will all work out. It’s only money we’ve been through much worse than being broke- although we have been that too. 😉 💰

Travel has also been a good form of bribing Logan.

“Get up and get moving and start feeling better or you aren’t coming to Mexico.” The fear of missing out always gets her out of bed.

Plus, she is also pretty wise.

“Mom, you work so hard to save my life. You have to let me live it.❤️” is what she tells me every time I suggest we stay home.

Sometimes, my coping skills suck and I scream and holler and vacuum the road outside my house. Sometimes all I desperately want to do is run away or punch someone in the face. Sometimes I don’t answer my phone and I avoid situations that I know will piss me off. Sometimes I say mean things to the people I love. Let’s be honest, sometimes, I do drink too much wine.

I am human.

I am broken and I am truly so fucking afraid every single day of my life.

But I guess I stay ‘strong’ mostly, and simply because I want to. Falling apart and being sad and angry all the time takes a shit load of effort and far too much energy.

Strong is a choice. I work at it because I don’t want to fall apart. I have done the whole falling apart thing. I’ve numbed myself with medication and distraction and learned that buried hurt doesn’t really ever go away.
It always catches up with you.

You have to face it.

You have a choice. I choose to sift through the shit and look for the goodness.

Life really can be good despite the bogus dirtbag crap that cancer brings.

There is good all around us and when you look for it and you decide to do things and migrate towards situations and people that make you feel happy and comforted the less power the cancer has.

Your own personal energy is like a fucking magnet. When you get stuck in feeling shitty and you attract shit. You wake up each day and say “I’ve got this” or “You are doing a great job” even when you don’t believe it,  you start the flow of energy and change.

Sometimes, you have to use the negative emotion inside you to elevate you into positive action.

I was so pissed off at cancer for so long I finally got mad enough to put it in its place.
Cancer is a part of our life, but it is NOT our life and it needs to know where it belongs.

I am not saying this to inspire anyone by my profound strength (insert eye roll 🙄) but rather to explain.

A. You wouldn’t be a mess- all the time- if your kid was sick. (Just some of the time 😉)

And

B. It is a process- all of it.

Life is a process and we get better at things with time and experience.
Sadly, I am better at cancer ‘momming’ than you.

Simply, for one reason and one reason only…

I’ve got a kid with cancer and you don’t.

Facebooktwitterpinterestlinkedin

How can I help? 10 tips learned from living with cancer for a decade.

As we enter Logan’s seventh round of chemotherapy and she closes in on her 300th lifetime dose, I find myself deep in reflection of what we’ve learned.

One of the questions I get asked the most is “What can I do to help?”

Sadly, cancer affects so many of us and when it strikes we are left floundering and wondering what efforts will bring comfort and ease some of the pain.

After the shock of ‘how could this happen?’ subsides, a call to action is how most people cope.

Here are the 10 things I have learned and have been most helpful to our family over the past 12 years.

1. No one knows what to do

You aren’t alone. No one saw this coming, and not one person can help you grasp the magnitude of the situation.

It is shitty and yes, unfortunately doesn’t discriminate. It happens to people who don’t deserve it.
Acknowledge this but also try to let your own sadness and anxiety around the disease go.

Try to think very deeply about the energy you’d want around if it were you. There is a difference between sympathy and pity. No one ever wants to be pitied.

Check your emotion at the door and bring only empathy and compassion to the space.

IMG_8309

There is also no place for anger, fear and worry. The person with cancer already has enough of their own.

This isn’t fair. Life isn’t fair. We can all see the elephant in the room.
Be truthful.
It’s ok to say how you are feeling but don’t make it about you.

One of the best things someone said to me when Logan was diagnosed for the fourth time was…

“I am so sorry this happening and I don’t know what to say except I hope she doesn’t die. The thought of having my child die really freaks me out and I have no idea what to do for you.  I really want to be strong for you but I don’t know how to navigate this. I want to fix it but I can’t and I will never know if what I am doing is right or wrong so please just let me know if you need more or less of me because all I really am trying to do is help.”

When your intention is compassion, nothing you can say or do will be wrong, ever.

Period.

2. Bring food

But not a lasagna.

It’s kind of an inside joke because at one point we had 18 lasagnas (all varieties) in our freezer.  It got me thinking.

Meals are such a godsend but when everything around you is heavy, it’s good to keep a few things light even if it’s just a food.
Green juice, salads, wraps, fresh veggies and fruits, blended smoothies and cold tea are some great ideas.

Hospital food and take out can get old (and super, expensive) fast.

Even when eating feels like the last thing you think your loved one will want to do, they still need to eat and believe me, cooking feels like a monumental task  when you are stressed or confined to a hospital room with limited resources.

A meal is the most primal and comforting thing you can do.

Try to give healthy choices and fresh options to keep energy levels boosted.

Also know, you aren’t helpless. Your cooking makes a world of difference.

Trust me, fresh food will be super appreciated, someone right behind you is already bringing a lasagna❤️

 

3. Give cash or just throw the damn fundraiser

We all want to do something tangible but more than something tangible we all want to do something meaningful.
We want to give a gift that is perfect and profound and beautiful. We want our efforts to inspire and remind the ones we love to be strong and courageous.

The special gifts we receive are very cherished.
But, for most affected by an unexpected diagnosis, cash flow very quickly becomes an issue.

Your loved one may assure you they will be fine (my standard quote😉) but know- expenses do add up and money does become an additional stress.

No one plans for additional expenses like

Eating out every day, parking, gas, medications not covered, purchasing forgotten items when stuck at the hospital, doing cool shit and checking off bucket list items, holistic, organic, (a sudden need to do what’s best) non toxic, essential oils, distractions, clothes that suddenly don’t fit, wigs, hats, fun activities, new pj’s, another iTunes movie, RMT’s, acupuncturists, Reiki masters, weird healers and expensive bottles of wine.

You get the point.

On one hand, money should be last thing you worry about but on the other hand income is reduced and banks have zero mercy.

Money may feel like a meaningless gift but it is far from it.

It is needed.

You worked hard for your money and it is an honour to be able to share it and even more of an honour to receive it. Coming together to collectively raise funds is far more than just giving cash. It is a beautiful energy of togetherness that opens space for people to do ‘something’ and for abundance to flow.

In my opinion, society in general has a weird relationship with money.

We measure too much of our overall value because of it. We believe the more we have, the happier we will be. We believe when we finally have enough cash we will find the comfort and freedom we desire and we believe the harder we work the more we will earn.

Most of us have a hard time accepting cash because of the very ties it has to our own self worth. Having less means feeling less than.

It has taken me a long time to understand my relationship with money. What I have learned from having to give up my career and go from being the family bread winner to an unemployed house wife is that money is just energy.

Open yourself up to any form of energy and it will flow in your direction. It may not come from where you think it should and you won’t always know how it will manifest. You just have to be super grateful when it does.

It’s hard to accept a hand out of cash because no one wants to feel like a charity case.

It’s that pity thing again….

Know you are loved and money truly only exists for one reason- so it can be exchanged.

Transferring and exchanging your money to give it away with kindness and intention while knowing you are easing someone’s burden and allowing them some freedom from financial stress is a pretty powerful gift.

Honestly, it’s the best gift you can give.

Because money can be touchy for some, you may fear that pride and ego will get in the way of your loved one accepting your kindness.

If that is the case, give it anonymously.

And if you don’t have any to give but someone is trying to raise some, find out how you can help.

Your time is so incredibly valuable and your acknowledgement will come from a deep knowing you have given so much more than just a few bucks.

4. Limit your miracle cures

I am so happy to hear that your cousin’s uncle’s sister’s aunt cured her own brain tumour with cannabis oil.
I really am.
And yes I do know all about it because I’ve been added to 85 private Facebook groups by 300 of our mutual friends.
I appreciate the concern but please know…sometimes the overload of holistic approaches and clinical trials can be overwhelming and feel borderline degrading.

Desperate times call for desperate measures.
I get it.
Trust me.
I’ve ordered everything from hundred dollar asian mushrooms to healers who claimed they could eat my child’s tumour.
I’ve done it all.
I’ve stayed up endless nights researching cutting edge procedures in Germany and spent hundreds of dollars putting MRIs on discs so I could privately send them to doctors in the US even though my oncologist has assured me we have access to most of the very same trials.
I’ve hired Chinese doctors, cranial sacral healers and had a reiki master shift the energy flow of the treatments given to my kid.
We’ve cut out sugar, ate a vegan diet, had our chakras balanced and our palms read.
I’ve opened myself up to prayer chains, allowed healing hands to brush over my daughter’s noggin and forced her to take a 10 week course on mindful meditation.

Our therapist has made a small fortune from us.

In the end what I have learned is we each have to do what feels right for us.

That just has to be ok with you. Period.

I believe in science.

I choose not to think the pharmaceutical companies and all doctors are part of a giant conspiracy of greed. Yes, I do watch all the Netflix documentaries but I still don’t believe in the heartlessness of letting another child die because they don’t care rather I truly believe they just don’t know.

Cancer is complicated. No two are really the same. We are making progress in treatments and survival rates. We still have a long way to go. Treatments are leaning more and more towards personalized medicine and what works for each individual.

This isn’t about having a debate or about my own ignorance. It is about science. It is about experience and it is about knowing better and doing better-for us.
I think we all have the right to do what we feel is best for our individual and unique situation.

I also think as bystanders and witness’ it is your job to offer up what you can to support our choices and not always need to fix things or provide solutions.

I believe in eating somewhat clean and exposing ourselves to as little toxins and stress as we can. I believe in living a life that is a quest to feel satisfied, balanced and purposeful.

Our motto is to find happiness, laughter and have experience. We believe the most powerful thing you can do to combat your disease is to control your mind. The body is just a vessel for the soul. Always feed the soul.

The rest is #rollwithit. You can’t change it anyhow.

So, I know you mean well, but please- read my body language.

My kid does NOT want to lick the healing salt off of the inside of a fish bowl every day for rest of her life.

And even if you believe the chemo is killing her, she believes it is keeping her alive so she can go see the kangaroos in Australia and the floating villas in the Maldives.

Give it to her.
Give it to us.

She deserves to feel empowered and supported.

We have no room for shame or judgement about what we aren’t doing to save her life.

And just one last thing- I know you say you’d do anything to save your kid’s life.

But remember you actually have no idea what it is like to have to do so.

5. Bring wine.
Enough said.

IMG_8341

6. It is not a competition

This is a big one. Because this has nothing to with cancer and everything to do with being human.
When all is good, a lot of us compare ourselves to others which is such a drag because when do it we never feel enough.

Not good enough, not smart enough, not rich enough or pretty enough. We don’t have a nice enough car or house, or good enough spouse or kids or job.
Social media is the worst for this.

But, on the other hand, when something really shitty happens and people become sick, or are faced with death the competition doesn’t go away. Instead, it flips and suddenly one party feels more privileged, more balanced and infinitely luckier than the other.

Friendships change because people feel afraid, ashamed and guilty about celebrating the good their lives.

Newsflash-it’s Ok.

The reason most people don’t want to die is because when they take a step back they realize life is pretty rad and they should have let go of bullshit comparisons a long time ago.

Yes it sucks to be faced with an illness (or have a sick kid) but what sucks more is when your best friend won’t tell you about a new boyfriend, a job promotion or a lottery win because they don’t think you’ll be happy for them.

The same goes for being sad. When I ask someone about their woes I always get the same reply “It’s nothing compared to what you are dealing with…”

No fuck.
It’s not brain cancer.
Nor would I wish my situation on even my worst enemy, so please let’s carry on.
Tell me about the dirt bag, plenty of fish date you had and how you feel like you are never going to find happiness. Tell me about your crazy mother in law, or the amazing anniversary surprise your husband planned for you.

Tell me about it all. Please. I need normal. I need to know it still exists.

Cancer may have stripped a ton from my life but it hasn’t taken away my heart.

I care, and I’m no longer in competition with you or anyone.

So, unleash and share.

7. Invite me.
I probably can’t make it but I still want to be included. Period.

8. Remember the siblings
Or the husband or the sister or the mother…
Care taking and riding someone else’s cancer rollercoaster can be exhausting.

The person who is sick is often too weak and too helpless to be able to acknowledge the efforts of those who are their primary caregivers.

Showing up and giving a high five, a Starbucks giftcard, a handwritten letter or a carebear onesie to those towing the line can make a world of difference to the whole healing team and take the pressure off the sickie who can’t show any gratitude between the doses of toxic poison being pumped into their veins.

Any gift given to the whole family  which can create an experience or takes the pressure off the people on the sidelines makes a huge impact.

9. Mean what you say, and say what you mean.

And for the love of god don’t say “If there is anything I can do to help..”

Because I can assure you we don’t know what the hell we need

BUT

we do know what we don’t need and that is any pressure to figure out and then tell you how you can be helpful and purposeful.

For starters, if you want to help- be clear and impeccable with your word.

If every second Wednesday at 4pm you can come wipe an ass- or clean a toilet or run a lawnmower or bring dinner or commit to getting drunk or staying sober so you can drive😉then only say it if you can own up to it.

People in trauma can’t stand wishy washy. When their whole world is uncertain your loose schedule will only add stress and put pressure on your relationship. Only commit to something if you can do it.

Also, know you don’t have to do big stuff and you don’t have to be a saviour and you don’t always have to be ‘there’ either.

Just be consistent.

It takes a village to get through cancer.

Don’t personally go broke (emotionally or financially) doing more than is reasonable (it happens).
Again, just be consistent and reasonable.

Set an alarm to send a text message or call on certain days. Whatever feels right and manageable will always be what is best for both parties.

Make yourself as available as you can but be fair to yourself and let go of expecting to be recognized or acknowledged. Your help means the world but trauma makes people assholes and sometimes they forget to say thank you.

Just know it is usually small insignificant gestures that make a world of difference to those of us who need you.

10. Love is all that matters. Period.

There can be a million excuses and reasons and things that get in the way of not doing what you want to most. Life is busy. Cancer is scary and awkward as hell. It is easy to postpone or avoid it all.
But nothing you tell yourself will matter when the opportunity passes or it’s too late.

The person who is sick will be baffled by who shows up to run the gauntlet with them and who abandons them in their time of need.

FYI we think we know who has our back- cancer changes everything.

But if you want to be there- show up however you can and don’t feel weird about it.

Disease is nothing more than the body being in a state of just that… dis-ease.

The funny thing is despite a fragile shell, this is usually a time when the spirit is at its strongest and authenticity rocks so….

Nurture however you can.

Show up.
Or
Give space.

Be peaceful
Respectful and encouraging.

Hug
Laugh
Cry (yes it is ok to cry- in moderation😉)

Listen (it’s also ok to sit in silence)

Support

Understand

Break bread

Drink wine

Acknowledge the fucked-up-ness of the situation and all the shit that comes along with it but don’t dwell on it. Negativity is so over done.

Read your crowd and think before you speak. As yourself “is this helpful?” If it’s not shut your nervous mouth right up. We say stupid stuff when we are scared.

Apologize when you need to. We all need to do it at times.

Hold on tight
And
Know when to let go

This may not be your path to walk you can make the journey a little easier simply by showing sweetness and love ❤️

 

 

 

 

Facebooktwitterpinterestlinkedin
Page 1 of 1012345...10...Last »