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.
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.
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.
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.
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?
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.
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.
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.❤️