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.
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….
Then, just like that BOOM>>>💥💥💥
We were admitted back to hospital.
Her MRI was scheduled for Feb 1st. The days leading up were ‘iffy.’
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….”
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.
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.
She seemed better.
Juliette let out a sigh of relief and this time, I looked awkwardly at her and started to cry…..
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.
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.
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.
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….
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.”
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.
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! 😉