I find that when I don’t write for a long time, it is because I am in my head.
Generally speaking, I always think too much.
I start a blog and then I reflect…..
“Nope, I don’t want to sound so negative”- Delete.
My hands hit the keyboard again…..
“Nope, now I sound way too Polly-Anna positive and disingenuous”- Delete.
Truth is, I have a really hard time writing when it comes from a place of what I think people want to hear instead of what I know needs to shared.
As the ol’ adage goes ‘the truth that will set you free’ right?
So, here goes nothing.😉
We are entering the sixth month since Logan has been re-diagnosed and for almost half a year now, our world, has been turned upside down and rocked by this new (and so damn old) reality.
There are good days and there are bad days but most of the time the bad days outweigh the good. We’ve struggled to stay positive and hopeful and patient but as the months have ticked by we are finding it harder to do so.
I haven’t written because words are hard to find and they are even harder to say.
The latest setback of Logan’s seizures have really messed us up emotionally. For anyone who has encountered, or lived through seizures, you know how terrifying they are and how suddenly your life feels like you are perched on the edge of a cliff.
Loss of control.
This is cancer. And it sucks.
As much as I would like post blogs making it all look as easy and inspiring as Lance Armstrong did, we are not machines, we are real people who are haggard and run down. This is the fourth time our child has undergone cancer treatment and this time is SO (emphasized ten million times) much harder.
Not only are Jared and I exhausted from the almost 12 years of caring for, planning around and worrying about someone with cancer, Logan is so tired too. Mentally, yes, but her body is also tired like I have never seen her before.
She doesn’t have the ability to just pull herself together (even for the fun stuff) and although she wants nothing more than to feel better, most days she just can’t.
I can count the number of good days (good days meaning awake and engaged/ all relative) since relapse on one hand, and even though we are doing our best to make each day count, the truth is sometimes the quest to do so is a struggle in itself.
We want so desperately for every moment to be the best they can be.
We worry about running out of time (but are NOT giving up hope). We are yearning to cross off each and every fun item on our proverbial bucket list.
One would think, it would be what you do if faced with possible death. I mean, who wouldn’t want to cross the finish line of life with an array of gold stars for living life to the fullest?
But, honestly I am learning this ‘idea’ just isn’t the way it is in reality.
You take each day as it comes.
You are forced to pick out the good moments and you try not to fall victim to the day’s allotment of shitty circumstances. You move the goal post and hit the pause button. You let go of expectation.
Logan is happiest when she’s snuggled into her bed. Period.
She loves it when the world is quiet and she has the ones she loves most beside her. She likes clean sheet day and fresh jammies. It makes her happy when one of us lies with her and watches T.V. She likes a back rub or having what little hair she has left blown dry. Most nights she tries to get me to sleep with her.
She likes to giggle and laugh while we look at our phones. She thinks the filters on snapchat are fun and she enjoys gossiping about the world around her, but she has little interest in participating in it right now.
Chemo is taking its toll, no doubt.
We are in the thick of it.
This cycle has been delayed because her ‘counts’ are just too low to hit her again. We are checking every couple days (and secretly hoping) that the doctors pull the trigger and start blood transfusions. There are pros and cons to doing so. We know giving blood is not a magical cure but somehow it would just feel nice to have a plan in place to help boost her up instead of knock her down all the time.
I am starting to wonder if I am pushing her too hard.
I am starting to wonder if I am pushing all of us too hard.
My therapist thinks I need to do work on accepting what ‘is’ instead of focusing on what ‘could have been’ or what ‘may be’.
I know she thinks I don’t ‘get’ where we are at.
Maybe it is because I try to avoid the conversation at all cost. Maybe it is because when she talks about the possibility of Logan dying, or spending more time at Canuck Place, I talk about the possibility of a POG study or Dr. Toyota using his laser or trying a different more aggressive form of chemotherapy.
Maybe, somewhere on her list of psychological red flags she thinks I am in denial.
But, despite any assumption, I do…..
I fucking ‘GET’ it.😩
Trust me, just because I am not inconsolably breaking down or picking out songs for Logan’s celebration of life doesn’t mean I don’t ‘get it’. I know where we are at.
I live it.
Every. Single. Day.
But instead of succombing to what is in front of me, I am choosing.
Every single f’ing day I wake up and I look at myself in the mirror and I tell myself to get a grip.
I tell myself that all I have is this day.
I tell my self that even though my life and these circumstances are out of my hands and I feel like I have zero control
I have control over my own thoughts and everyday I tell myself I am not going to let myself go crazy.
I am losing so much, but I am not going to lose myself as well. I am not.
I ‘get’ how people might think I am bananas when I talk about our next family trip to Mexico or our 90 day plan, or selling our house to move to the Okanagan or when Logan goes back to work, so she can start paying some of her own darn bills.
Trust me, I hear myself and I know at this point it sounds far fetched to you, but it doesn’t mean I don’t ‘get’ it.
They, (doctors, nurses, therapists, pharmacists, the Canuck Place people, and everyone else on our healing team) suggest our life is now about ‘living in the moment.’
These words are really starting to bug me.
Almost as much as ‘You just have to be positive and quality of life’.
If you ask me, these statements are pretty loosely thrown around.
Easy to say and sound like perfect words to use, in theory, but in reality, almost impossible to practice.
I am starting wonder if these words are just part of protocol. If healthcare providers are instructed and trained to insert certain lingo at different stages of treatment? How can it be possible they all have the same language?
I, can however, read between the lines.
They think I need to start having ‘THE HARD CONVERSATIONS’.
They think maybe I am living in a bit of a fantasyland, that maybe there is a disconnect and we think Logan will be able to go back to her ‘normal’ self again.
The hopeful conversations that ‘they’ used to have to inspire us are now conversations they fear having just incase our perceived denial is worse than they think.
I can feel the shift in our meetings. Every single person is starting to lean into the hard conversations with us. Even when they try to be soft about it.
Our talks usually now start with a weird pause, drooped shoulder, tilted head and long deep breathe before the words, “Sooooooo, how are things?” Or “I am soooooo sorry to tell you….”
I let them go through the process, because I also ‘get’ this can’t be easy for them either.
But truth is, what ‘they’ don’t realize (despite all their experience and training) is that ALL I do is have the hard fucking conversations.
All. Day. Long.
I have them with myself, with other doctors, with strangers and with friends. I have hard conversations with benefits providers, pharmacists, Logan’s pals, other cancer moms, and my favorite nurse (poor thing, she gets all the recaps) 😘
There are hard conversations with people in my life that just ‘don’t get it’ and never will…and then there are the conversations where I don’t have to say a word and there is just space and compassion making words even harder to say.
I have hard conversations about the why’s? the when’s and the how’s? About the possibility of things getting worse, and about windows of opportunity when things might get better.
I have hard conversations about ethics. How far does one go to save someone’s life?
I have hard conversations with my husband who is feeling trapped at work and in this life. The fear around money and the financial burden of this resting solely on his shoulders. The repercussion of giving up an opportunity for fresh start and a new career hindered by this cancer the fact he can’t fix any of it. All he wants to do is provide the very best for us and he feels like he’s failing. Every. Where. He. Turns.
I have hard conversations all the time with Brody who just wants freedom and fun and is so damn tired of always being stuck at home.
I have hard conversations with long time friends who are now afraid to share their own lives upsets and feelings with me because in their words “It is nothing compared to what you are going through.” (P.S. NOPE it is not- and thank God for that- but life is not a comparison or a competition. Please indulge me with your normal stress’ I really need it.)
I have hard conversations with people who I refuse to even engage in conversation with.
But the hardest conversations I have are always with Logan.
Yes, we talk about the possibility of her dying.
How can we not?
This fear is always right there on the surface behind every headache or weakness, or now, the worry of every seizure. We think about it as we channel our energy hoping for the cure with every dose of chemo. Thoughts around it linger every night as another day ends and we wonder how many we have left.
Logan doesn’t want to die. Period.
She has told me she isn’t ready and still has so much living she wants to do but she also fears what life looks like the way she is now. She fears being a burden for the rest of her life.
We tell her she isn’t a burden, but she sees us struggle and feels the fear we have (but don’t say) about this being our permanent reality.
Logan isn’t much for talking about her feelings so when she opens up, those are the REALLY hard conversations.
I am used to speaking for her. Most of the time she asks me be her voice for everything. She trusts and expects me to step in and advocate for her. She has a very hard time getting her thoughts from her brain to her mouth, so, most of the time, even if she wants to or needs to; she just says nothing at all.
She keeps a lot of feelings bottled up for fear of judgment or misunderstanding.
Listening to her struggle to articulate how bad she feels for things she can’t control or hearing her fears and sadness, knowing there is nothing I can say or do to make it better is heart wrenching.
Conversations between us where the tears outweigh the words are some of hardest conversations I’ve ever had.
Logan is strong, her spirit and her will to survive is fierce despite her bodies fragility. She doesn’t want to give up. She is not ready and she is very clear in that.
We have the hard conversations but we are doing our best not live in them every single day.
We ‘get’ it.
This is NOT over our heads.
And just because you see us smiling or joking, or propping her up in a wheel chair at a hockey game, or lugging her around the mall to buy new outfits for our next holiday doesn’t mean we are in denial of where we are at.
It means that despite not having one single say in any of this, despite feeling trapped and ripped off and scared as hell, we do have choice.
We have a FUCKING choice- (hear me universe???) and as a family we are choosing how we going to face Loggie’s cancer and how much power we are going to give it.
We are CHOOSING to find pockets of goodness and fun. We are CHOOSING not to let it break us. We are CHOOSING to continue to make plans, to book holidays, to renovate our house and to freshen up our space and move forward. We are CHOOSING to laugh instead of cry, who we want to surround ourselves with, what feels good and we most of all we are CHOOSING how we need to be supported during this very messy time.
At this point, all we have is choice so guess what?? We are grabbing it by the balls.😜
None of us—have a choice in when we die, but we ALL have a choice in how we live.
This life, our life, and this fourth fucking time facing cancer, can piss off, take a hike or at least know it’s place.
This is strictly on our terms. Period.
It is Logan’s terms and however she wants to rock out her time here, is how we as a family will roll with it.
So, screw the hard conversations. They aren’t hard.
They are just, simply, necessary.
I learned a new word this week- learned, as in felt (I am starting to think that feeling is only way to learning?).
I’ve added it to our motto.
So, screw the hard conversations, for right now. We are far too busy trying to live life right now to dwell on them. ❤️