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.
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.
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.
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.
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.
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?
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.
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.
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.
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 ❤️
Riding the cancer rollercoaster can be exhausting. Things go from bad to worse to good to great all the time.
Sometimes it is in a day.
Sometimes it is in an hour.
Sometimes we live our life moment to moment.
Our motto of #rollwithit is really about being open and remembering everything is temporary. The bad moments will pass and the good ones come along for us to savor and embrace.
There is no balance. It doesn’t exist in our world. Moments go from complete darkness to blinding light.
Sadness to happiness. Fear to hope.
Last week I had a long meeting with Logan’s oncologist about her recent MRI and we discussed realistic goals 😩😩😩 and this week we spent and entire day with Johnny Depp. (For real!?!?! WTF!)
How does one even process the insanity, inconsistency and contradiction that happens to be our life?
It is crazy.
Log’s MRI was filled with good news but there was also some really bad news.
I left the meeting with our oncologist feeling torn and somewhat broken yet incredibly hopeful and optimistic.
In one sentence I was told her scan was mainly stable with some mild continued improvement in the right anterior pons (the area of the brain we are pretty sure has caused her sudden decline). I was on cloud nine.
And then, just as quickly I was given the bad news and my hope was ripped away.
Her organs are in distress and it is unclear how many more doses of chemotherapy she can endure. There is concern for her liver (god only knows I thought we’d be having a discussion about mine first😩🍷🍷) her bone marrow, her kidneys and her lungs.
Almost 300 doses of chemotherapy is taking a huge toll.
I could go into a ton of detail about what this means but basically what it comes down to is a balance between killing the cancer and not killing your child.
Juliette (our oncologist) encouraged me to really think about what ‘goals’ we as a family, have with this treatment.
She encouraged me to reach out further to Canuck Place for support and respite.
To Prepare.
She discussed the uncertainty of what might lie ahead.
She reiterated the reality that a ‘cancer free’ life is not likely and that chemo is not a cure.
She reinforced what we already know- we are simply buying time.
What the time looks like and how much we have is still anyone’s guess.
She told us we’d reached a fork in the road.
There is no choice but to lower the dose of chemotherapy to protect Logan’s organs from failure. She also gave us the option of stopping treatment altogether.
She assured me in our situation there is no right answer and there was no way I could ever make a wrong choice.
I felt like someone punched me in the gut.
“But, she is doing so much better” I said.
She agreed.
I threw around different and obvious scenarios about what would happen if we stopped treatment.
I felt so puzzled
“So, the MRI looks better and clinically Logan is doing much better, so it is pretty safe to say the chemo is working, right?”
She nodded again.
“But if we continue giving her chemo she may go into organ failure or we may do irreversible damage and then we may end up a totally different shit creek?”
Again, the same nod.
“This is where it gets tricky. It is a delicate balance. There is no right or wrong now. This is where we talk about goals and dreams and hopes and what you, as a family, want to achieve.”
She tried to be encouraging and humorous, reminding me of how many times she had been wrong and Logan had beat the odds but it didn’t work.
I know this time is very different then any place we have ever been. She does too.
I started to cry.
“I don’t want to talk about fucking goals- especially with you.” a primal squeal escaped my mouth.
She didn’t say a word.
“I mean, I hate talking to you about goals because I know you think our hopes and goals and dreams are impossible and telling you makes me feel crazy and slightly delusional.”
I paused to look up at her. I could tell she was trying to holding back her own tears.
“You have no idea what this is like. I see you every few weeks or months and you don’t get to measure our life with pictures or blood tests or exams. Your goals are not the same as ours.”
It remained silent and she looked really sad. I could tell she knew saying nothing was best.
She has had this conversation many times before and she has experience navigating it. Knowing this infuriated me.
“You don’t know how hard this is. You get to do your job and go back to your healthy kids and your great f’ing life”
I felt bad for attacking her. I know logically this isn’t her fault but I couldn’t stop myself.
“When we lay in bed at night as a family, we don’t talk about Logan dying. We talk about when she gets better and what our next adventure will be. We talk about Logan being well enough to take a trip around the world. We laugh about running away and having so much fun together. We talk about all the places we want to see together and the cool shit we still want to. We talk about volunteering in Africa and eating gelato for breakfast in Italy and doing yoga in Bali. We talk about Jared quitting his mundane job that he has been forced to keep to pay our stupid bills and we talk about Brody blowing off school for a year and getting a real life education. What we talk about is forgetting about this bloody hospital and cancer and this whole life. We talk about checking out, and taking a freaking break and regrouping. We dream about freedom.”
At this point, I was crying so hard I had full blown hives and snot running down my cheek. I was slobbering and stuttering and shaking.
“We want Logan to get better enough so we can go travel for one solid year. That, Juliette is OUR secret, private fucking goal!!!! We want ONE month away for every year she has been sick, 12 months for 12 years, and I hate that I am forced to sit here in this windowless room and listen to you discuss trips to Canuck place when I have been telling my kids our trips are going to be to see the orangutans in Borneo.”
I paused to catch my breath.
“I don’t know if I am in total denial or if cancer has made me half ass crazy or if you just aren’t on our side or if you don’t ever really see us at all?”
My tone softened “How can you not already know our goals? It has been twelve flipping years? Life all over the map is our fucking goal!”
I let out a long sigh and a slight moan and I looked up from the ball of Kleenex I had torn apart in my hand feeling slightly ashamed of my language.
She was smiling and her words were comforting. The energy shifted.
“Well then….. I guess we don’t need to discuss any more goals today. You clearly already have them. Please, do try to consider taking a little more down time at Canuck place. This is beyond exhausting and at the very least you deserve a cooked meal.” She wrote some notes in her file. “But in the meantime, we will need to start teaching you and Logan how to change her feeding tube without nursing assistance. I assume she’s going to continue to need it for the unforeseeable future and a G tube insertion won’t be great option if she wants to swim in the ocean on her trip around the world. When it is time I will reach out to my colleagues in different countries and see what they can do to help you get the medications you will need. If we can, we will figure out this plan and work towards your goal. What is your timeline?”
I couldn’t answer because I was so shocked.
Juliette is never like this.
EVER.
She is cautious beyond reason and maybe she just threw me as a life line to keep me from a complete meltdown. I don’t know, or care, because I love her for it.
Just like an alzheimer’s patient doesn’t want to hear they are confused, a cancer mom doesn’t want to hear about a life with out their child.
She said exactly what I needed to hear. She would try to work with us. That is good enough and I won’t ask for more.
We notched out a loose plan to move ahead with another round of chemo, albeit a lower dose, and continue to monitor her organs a little more closely while planning our epic around the world tour. We will aim to get Logan strong enough to leave sometime within the first six months of 2018.
We left the hospital and went straight to Staples and bought a map.
Maybe this is just a dream.
Maybe an around the world trip might never happen and maybe we are crazy for even thinking it can but we are going to plan for it anyway.
It gives us something to daydream about, something to hope for and something to strive to work towards and something to talk about. The ultimate 90 day plan.
It is our own personal, perfect and insane goal.
I honestly don’t think it will be that hard to achieve. I mean wejust have a few hiccups to work through….
Cancer
Treatment
Medication
Work
School
Money!?
No biggie, right?😉👊🏻
In the meantime, we will continue to live in this moment. We know its not all about the big stuff. The everday stuff is what really matters and we aren’t going to let it pass us by. Living the best life we possibly can means finding fun and possibility and opportunity and comfort in the mundane.
None of us will ever be able to know in advance what life may bring.
One day you could find yourself planning end of life bullshit and the next day you have to pinch yourself because some A list celebrity is sitting next to you wearing a hat with your website and motto on it telling you dreams can be become possibilities and to just look at him and continue to believe and not give up hope. Ummmm- ok 😉
I feel so mixed up.
The past 7 days have been a whirlwind of extreme emotion and everything feels surreal.
Super highs and super lows.
I reached out to my good friend and tribe member Heather for comfort and advice. She is a cancer survivor, a brilliant mind and one of the kindest hearts I’ve ever met.
It took her a few days to respond to my news about Log’s MRI but when she did her words were perfect.
“When I was a little girl, I remember learning about the Buddhist practice of perfecting sand art- only to brush it all away when finished. I remember being baffled by the triviality of this act and scoffing at the perceived waste of time. As I’ve grown older my thoughts often return to this practice and I feel I understand it more and more.
We spend the time gifted to us constructing these beautiful intricate lives and it feels like such a cruelty when the artistry is swept clean. We want to hold on to what we have created, to keep it close to us because is so lovely and we’ve worked so hard on the construction. And yet it is the action of creating that matters in the end- not what remains.”
And so we will… simply, continue to create.
This life.
Our life.
As it is today and for what we want tomorrow
We will plan.
We will dream.
We will hope.
We will allow the artistry to be swept clean when it needs to be and then we will start fresh once again.
We will continue to #rollwithit
Because, after all, it is the only thing any of us can ever really do.
Much love,
J❤️❤️🤞🤞
P.s. Yes, Johnny Depp is super rad and Logan has decided he’s basically her boyfriend now. 😘❤️
It doesn’t matter how many times I have sat in the MRI waiting room, I always feel panicked.
I don’t know why but every single time I enter that room there is a sudden pulsation of fear that overcomes me and I literally feel like I am going to lose my shit.
The MRI waiting room isn’t a scary place and theoretically it isn’t any different than any other waiting area in the hospital but it doesn’t matter. I loathe this room and almost choke on the lump that forms in my throat every time I have to sit in there.
Maybe, because I know even though it looks the same as all the others, it is different.
It is a room that carries a hefty, weighty, stressful energy and I sense it in every fiber of my being.
It is where families go to measure progress or confirm their worst fears.
No one gets an MRI because something isn’t wrong.
An MRI is a big test and it holds clout.
Despite any pacifying from doctors, the pictures that come from the scan make almost all the treatment decisions.
Knowing this means I can almost feel the banging of the machine through the thick painted cement walls when they fire up the machine.
The thud of the metal door from the waiting room to the radiologists desk seems to close harder than any other door in the hospital and every time it does I consciously think to myself, “You have to let it go Jenny. It already is whatever it is going to be. ”
Only I never can just let it go.
It is impossible.
Instead, I stew in my fear and worry and sit in that room which feels like torture and limbo combined.
It is hard to explain the intensity of the wait between a scan and the report but if you have ever experienced these moments, you will know what I mean.
I used to go into the scan with Logan every time she had one.
I used to think I could tell by the facial expressions of the technicians what the pictures were showing. I used to drive myself crazy trying to see a reflection in the glass between the machine and the computer screens as the images appeared.
I used to be so desperate to know the results, I felt like I was going insane from the sound of the machine as it began to hammer.
Now, I just sit silently outside in the irritating, confined waiting room trying to calm my own nerves.
I don’t exactly know why or even when I decided to start sitting outside the scan but today I realized it is no easier than being beside her.
It is all I can do to not to throat punch the parents who turn The Wiggles on the TV full volume while ignoring their kids who are throwing around plastic toys and playing the xylophone.
It is all I can do but wonder, “How the fuck does one cope with this? How the fuck do I cope? Am I even coping?”
MRI day and business trip= no coping and no shoes 😳
Today, I tried to be super evolved and self aware. I journaled my way through my stay in the MRI waiting room. I was in the midst of writing through my feelings of why the room freaks me out so much when it all hit me.
I had just run into DR. Rod in the hall.
The kids and I were taking a selfie outside the MRI room when he came up and joked about our lighting and our angle.
“Where are you off to?” I asked him
“ICU.” He replied with a slight head tilt.
ICU is shittier than MRI. We both know it.
I looked down the long hallway with the stars on the wall indicating the route.
We’ve been there.
Actually, I think we’ve left MRI and very quickly been admitted into the ICU or vice versa.
It hit me like a ton of bricks.
MRI is so fucking scary because it is the moment when you realize the magnitude of the situation you are facing.
MRI reiterates that you are caught between living life (and walking out of the front door of the lobby) and facing death (and heading down the hall to follow the stars to the ICU)
So, it is just “holy fuck!!”
MRI should be scary simply because it is…..
Super Scary. Period.
And another scan is now done and yes I am typing this while drinking a glass of wine.🍷
This glass of wine is from a neighbor who left me bottle at my doorstep because she totally knew I would need it tonight. Thank the dear lord for moving me next door to Lesley.
Believe it or not I am not as nervous about this scan as I usually am.
I think I know what to expect.
Logan is doing better than she was, but she is also a long way from where she needs to be.
We are just plugging along (having as much fun as we can, when we can). Which is all I think we can do at this point.
I really am expecting a ‘status quo’ report.
But expecting and wishing are two different things and the crazy thing is, as I write this I am reminded how I don’t know what to wish for.
Of course, I wish her cancer would just disappear.
I always do and I’d be a shitty parent if I didn’t, but what if tomorrow I found out it was all gone and this Loggie is the Loggie we were left with.
Would it be enough? Would we feel like we had won the battle?
Logan is so far from where she needs to be.
Could I accept where we are at today as the ultimate success and rest of our lives or as I sit here tonight should I be wishing to find out Friday we are only making progress on the road to the cure?
I don’t know.
What I truly wish for is for a life that wasn’t ever about cancer.
I wish this disease wasn’t part of our personal equation, but it is.
And reality has a shitty way of being real so there is no point in wishing for something that can’t be possible.
So, what I am left with is I don’t know what to wish for and I have finally decided that is ok because sometimes wishing is just a recipe for disappointment.
Maybe my therapist will help me to better understand this question.
Poor thing had a cancellation tomorrow and called me in at last minute.
My first thought when I got her message was “SCREW YOU UNIVERSE!!!😩😩😩.” But then I also said a silent thank you.😉
Good timing. I know I need it.
Results come Friday and the day between the scan and the report can be a doozy.
On that note, the new hospital is almost built and ready for patients to move in.
Do you think it is too late to suggest they make sure the MRI machine is no longer next door to the ICU?
Somebody I really admire once told me “You can have bad days but it doesn’t have to mean you have a bad life”
Her wisdom has stuck with me and thinking with her logic makes it difficult for me feel sorry for myself.
I mean, some days I feel super shitty about our situation because cancer is so fucking challenging.
Every single day is tough and the truth is, as time goes on it only gets tougher.
I hate it.
And I feel sad and angry and more than anything,
I feel tired.
So. FUCKING tired.
Of all of it.
Every aspect.
Providing 24 hour round the clock care is exhausting. Logan’s needs are intense and I feel like I never get a break and its draining and I am torn between wanting to run away and wanting to stay put.
Cancer is consuming.
All. The. Bloody. Time.
Living this life, every single day, truly is a struggle.
An uphill battle.
We may try to make it look easy but the truth is, it is far from easy.
It is a struggle to not let this hardship and the pity and the bitterness I feel eat at the very depth of my core.
It takes effort to not let negative energy penetrate you and strip you of your happiness and joy.
It is hard not to feel ripped off or resentful.
It is a battle.
A weird, internal battle where you can see that you surrounded by so many people who love and care about you, yet you still feel so completely isolated and deeply alone.
You wonder, “Does anyone even ‘get’ the magnitude of this?”
You don’t ever ask because you already know they don’t. They can’t possibly. You take some peace in knowing they never will.
But the struggle is even harder when you try to explain and find the words.
Because, there is no explanation for things you, yourself, don’t even understand.
There are days when you wonder if the fight is worth all the effort you put in.
You know yourself better than anyone and you can feel what is happening.
You are breaking. Slowly.
Your patience is wearing thin.
The pent up frustration you have chips away at you and fragility surfaces. You wear emotion on your cuff. You feel things you’ve never felt. Your feelings can catch you off guard.
You begin to fear what you are praying for.
Yet you still pray.
You pray, every moment, of every single day simply because you don’t know what else to do.
Some days you feel like prayers are useless and fall on deaf ears. More often then spoken in the cancer world things get better and then just as quickly they get worse and life feels like it is flipping you the bird.
Your efforts feel wasted. You look at you child and wonder how fair the decisions you are making really are.
The chemotherapy is now taking such a toll on Logan. Her blood pressure is still very unstable, she’s had another seizure, she is rapidly losing weight and has had to start daily NG feeds again. The intensity and pressure of her headaches are increasing and cognitively she has continued to decline. We have another MRI coming up and although the last one (only 3 months ago) showed improvement, I worry, she has regressed.
Mornings are a really terrible time for her and there are days when I feel like nothing we are doing is moving us in the right direction.
Sometimes, I feel like picture I am painting for the world (and for myself) is not always the truth of our situation.
This leaves me conflicted.
Because the truth is, most of the time our life is a giant mess with fleeting moments of extreme goodness.
It is intense yet jammed up like rush hour traffic. Energy wanting nothing more than to move forward yet forced to be completely stuck.
I wake up after each restless night ready to face the torture of another day knowing accepting the unacceptable will be inevitable. Life is all about adjusting expectations and rolling with the punches and making the best of it.
I am tired of making the best of it.
But as hard as my life is, my kid’s life is harder. I am constantly reminded of this.
So, I suck it up. I feel guilty about my own pity and try to make this life super awesome for her and Brody and Jared.
That is what mom’s (and dads) are supposed to do, regardless of the shit, right?
It is the job we unknowingly sign up for. It is the dark side nobody tells you about parenting. The moment you have a baby, your life is never really about you again.
The truth is….
I have never felt more stuck or unsure in my entire life.
I should be better at this.
I thought hypothetically, if cancer ever happened again as a mom I would have it cooked and handled.
I thought somewhere inside of me, being a cancer mom vet would protect me from the pain of it all.
I thought exposure would make me an expert.
I learned there is no truth to my thoughts or expectations.
I am not better at this.
In fact most days I feel like I totally suck at it.
I feel like I am barely hanging on.
I wonder every single day why I have been chosen for this impossible task.
I think about my own, eight year old, carefree self and all the hopes and dreams I had for my life and I feel so broken to think of the possibility and ignorance I once felt.
This can’t really be it, can it?
In a quest to have it make sense, I spend so much time in contemplation, therapy and in search of a meaning. I read so many books.
Mostly, the work I do on myself and the things I learn only make me feel more lost.
Go figure.
But I do know this is not my story. It is just part of the process.
I know, although I may not always display it and despite what I tell myself, I am a better version of who I used to be.
I am not any worse than I think I am, I am just really hard on myself. I always have been.
It is a lifetime pattern of beating myself up and an unrealistic perfection complex that is now amped up by wanted desperately to save my child’s life and cure her from this horrid disease but knowing it is totally out of my control.
There is no road map, or instruction manual. We are all doing the best we can.
I draw strength from Logan and she truly is the guiding light for this whole family.
Experience, knowledge, and education doesn’t mean shit on a cancer journey but it really does mean something in the whole scheme of life.
This journey (god I hate that word) helps you get better at being the person you want to be, it has nothing to do with being a better cancer mom.
You take less shit because you have no space for it. Your circle gets smaller but the people in it are super rad and you make decisions based on what you want to do right now instead of living in the past or waiting for the future.
You start to feel everything so very deeply and you get better at saying yes when you can and no when you can’t.
You get to be the recipient of people’s kindness and love and compassion.
No one should have to do this four times and going through it time and time again doesn’t make you stronger. It exposes you but that exposure doesn’t always give you the perspective you need and exposure doesn’t make you more equip to handle what you are forced to face.
Cancer doesn’t give you much but the journey through it does.
It teaches you endurance and it makes your search for happiness and purpose that much stronger.
Struggle shapes you.
There is no sense to things that don’t make sense.
Period.
There are things in this world that we can’t begin to understand and there are things in this world we shouldn’t even try to.
We aren’t meant to understand everything.
I don’t know alot for sure, but I do know life is a process bigger than anything any of us have control over.
I believe we might have to do this many times over to figure out the master plan for our own little souls so I think the right thing to do is focus on the good while we are here.
This is why I have a hard time feeling sorry for myself, or Loggie, (although I desperately wish she didn’t have to be in pain) or for my family, because there is still so much good in this life, in our life.
And because of this, I think I have a responsibility to focus on that good.
Humanity.
Hope.
Possibility.
Kindness
And
Choice.
When you say (and you feel) “My situation sucks, but my whole life doesn’t….”
There is power in that.
Logan taught me this.
She hates having cancer but cancer has never had her. She is gracious and graceful and she is hopeful and she is thankful and she at peace with it all.
It is why goodness always seems to flow towards her and as a result towards all of us as well.
Gratitude is not writing in your journal. You may have to start there and use it to keep you on track but gratitude is not about looking out at your life and saying a verbal thank you.
Gratitude is about looking inward and thanking yourself for being strong enough, aware enough and enlightened enough to recognize possibility and opportunities and good people and then use the energy you have inside you to create more goodness.
I post so many good things to the world simply because I want more goodness to flow into our life.
Not because cancer is a fucking breeze.
Not because I feel like an inspiration (I am always caught off guard when people say this to me. Do any of you know how much wine I drink?🍷😳😉) and not because every single day I don’t realize there is going to be another set back we have to face.
I do it intentionally.
I send out what I want more of.
I have come to learn that struggle is sacred and sometimes we have to face the really hard shit alone, and when we are strong enough to understand it only then can we release it out into the world and ask for support we need.
P.s. It will show up.
The same way all of you have somehow showed up and are now connected to our family and our story.
And if you have any doubt just look below at this beautiful smile and know…
Apparently yesterday was the dark moon. I read all about it on Danielle Laporte’s Instagram page.
“It is the time of the month when the moon is reflecting the least amount of light. In esoteric terms it’s when the light versus the dark and it’s the “darkest before the dawn”. After a dark moon a crescent moon of light forms. Dark moon days can feel like struggles of opposites, and real ass-kickers.”
Yep it was a dark moon, and a fucking MRI day.
Doozy.😩
It has been an all around tough week and truthfully a tough transition back to reality after our Mexican adventure.
Going away and having our ’90 day plan’ is crucial to our sanity, but it does make stepping back into the ‘shit show’ that is our life that much harder.
This week for some unknown reason Logan’s face started to swell. She is also day 21 in the chemo cycle so her counts are starting to plummet and she feels like ass.
We spent some time in the ER this week, then returned to hospital have our own doctor take a look at her. As usual everyone is baffled by Logan’s mystery symptoms and swollen face.
An oncologist we’ve never seen before casually suggested “Sometimes in the medical world it is OK not knowing why symptoms occur.”
No, I didn’t punch her in the face but I did break out hives and almost swallow my tongue whole as told her how her words made me feel.
Then, I took to Facebook and wrote a long rant about her bedside manner which I later deleted. Writing is my release but it wasn’t entirely fair to her. I think she got it. We all get to make mistakes but I learned we all have the right to be heard.
I am pretty sure in the end the whole situation was a learning opportunity for both of us. I am leaving it at that.
Of course, I was panicked.
My kid’s head was swollen.
She looked somewhere between an Avatar and Rocky from the 1985 movie ‘Mask’ (Hmmm…come to think of it I’d play a good Rusty Dennis in the remake). I may have been a bit bitchy in my presentation to the ER oncologist that day, but for good reason. Had Logan’s toe been swollen I wouldn’t have given her the gears, or spent my sunny holiday Monday paging ‘on call’ residents.
Did I really need to tell them?
“She has a fucking brain tumour, people!!!”
They knew, but as residents they avoided the conversation like the plague. Her MRI was already booked and god only knows no ‘first year’ want’s to be the one to bump a major scan up by 2 days for no good reason. Instead, they offered to admit us.
I told them I needed a glass of wine🍷 and I’d take my swollen kid home. The conversation ended there.
Two days have felt like forever. I could hardly look at Loggie because the fear of what was really going on would literally bubble up from the pit in my stomach through my esophagus and I could taste the bile.
“Fuck me. Her tumour is growing and this is hydrocephalus.” I told myself.
“Stop it Jenny. It’s nothing…… no wait, maybe her tumour is coming out of her nose, maybe that weird healer you had stay with you years ago telepathically felt Logan was sick again and she’s sucking it out or eating it or whatever the hell she said she could do all the way from across the country…..” My mind paused. “Healers can do that shit, right?”
I paced around my house.
I ironed my bed sheets.
“Nope, this is the beginning of the end. Prepare yourself. It IS the end. By this time next week she will be in surgery, and then the ICU and then what? Do we do POG study? Will she need a shunt? Fuck me, I should text Dr. Rod on Facebook…..No Jenny, you can’t text Dr. Rod. He cannot diagnose via social media. Get a grip. Not fair….. Don’t text Dr. Rod”
Ugh……
Finally, MRI day arrived and it was a dark moon.
Apparently my only saving grace was that the very next day it was the crescent moon. New beginning, more light. “Hang on Jenny” I told myself all day.
Loggie got blood.
None of her infection markers indicated she caught some random disease in Mexico (Thank God or we’d never get another recreational ‘top up’ to catch a flight to paradise.) She hadn’t blown an eardrum and there was no abscess in her sinus cavity. She wasn’t having an allergic reaction. There was NO known reason for the swelling.
All we could do was wait for the MRI.
The last 24 hours have been some of the longest hours of my life.
Fuck the dark moon and Fuck the crescent moon too.
In the cancer world, there really isn’t a whole lot of light after the darkness. Especially when you are in the thick of it. There is only intense darkness and then there is a new day. And some days are filled with more intense darkness and some days are a little less dim but mostly they are the same. You need to be a fucking lotus flower and grow in the darkness and mud. You can’t wait for the light. Ever. Period.
So, now, we don’t have the full report from Loggie’s scan yet but we do know that there isn’t a new massive tumour causing her to look like an Avatar.
We also know that the rest of her tumour looks somewhat the same. There is no new worry about the frontal lobe, that unexpected lesion has not grown. The big asshole tumour in the brainstem also has not shrunk or grown, and what felt like they may have been ‘throwing us a bone’ was just hesitation when they said there may be a little LESS signal abnormality on the left side of her pons.
I started to cry.
And then I was reminded about picture splices. They are always slightly different so the pons could actually just be the same.
Sigh.
We were instructed to celebrate with wine and ice cream, but maybe only one glass and one scoop.
Cautiously celebrate…..
Hmmm new concept. Maybe not “Cheers!!!” but ” Go ahead and crack a 30 dollar bottle tonight instead of a 15 dollar one, right?”
Our oncologist told me she was reaching out to the radiologist to discuss the finalized report later this afternoon but wanted to call me this morning to let me know there would be no ICU or surgery this weekend. Logan didn’t look like Rocky from the movie Mask because there was a new tumour and her old one wasn’t coming out of her nose.
Silence.
She told me to breathe.
I let out a giant moan before I hung up.
At first I felt super relieved and maybe even a bit happy. “To hell with the swelling!!! Sometimes in medicine we are comfortable without knowing what is causing symptoms”
I will go with that..
But then it came rushing in….so fast and so harsh.
Why am I so angry now???
I have pondered it all day and
The truth is (#2) Sometimes feelings in themselves are a paradox.
They contradict each other and you feel them both at the very same time.
You can be happy and relieved and sad and ripped off in the exact moment.
You can be grateful, and bitter.
You can be both afraid of life without your child and afraid of what life will be like if they continue to live. You just fear it all. The unknown is consuming and terrifying.
(Hardest statement I’ve ever wrote or admitted but so true)
Cancer is not fair and it’s really hard. It doesn’t let up. Ever.
There is no good alternative when you are living with this beast but to face it.
You do the best you can and some days, you live in the shadow of the dark moon and other days your crescent moon comes midway through the month and not very next morning.
You can beat yourself up for feeling sad when you should feel happy and you can feel shitty for saying thank you to your doctors when all you really want to say is Fuck you!!!
Stable is good when you know it is all you are going to get, but stable NOW is not as good as stable was 2 years ago. So it is relative and ever changing.
Logan now requires twenty-four hour, round the clock, care and that sucks.
Every day brings something new and the reality is, one moment you can be speaking with your oncologist who is telling you to breathe and the next the respirologist is calling to tell you your kid failed her breathing test and you need to come back for another follow up (Yes, that happened today).
Feelings can really mess with you if you don’t understand them.
I am only just beginning to figure out my own.
Today I feel sad, when I should feel happy and that is OK, because it is the truth.
I am sad for every single time I have to move the bar, or accept what is unacceptable and celebrate when all I want to do is crawl in a hole.
I want my kid to beat cancer, and be normal and healthy and independent.
I want this to be a bump in the road of her life and not the whole fucking highway.
I want to cure her and shelter her from all the pain.
I want to protect her.
I want to log into to her social media and clear her fucking newsfeed of cancer stories. I don’t want her to know anyone else who lost their battle and for fuck sakes I don’t want her to lose hers.
I want to run upstairs into her bedroom out of breath and tell her all of her strength and hard work has finally paid off. She’s winning her fight.
I want tell her, the cancer has shrunk and she’s beating this. ONCE AND FOR ALL!
I want to hug her brother with good news.
I want to see the relief in Jared’s eyes.
I want to feel the joy deep in my gut and I want it to replace all the fear and sadness forever.
I want my conversations to start with “When Logan HAD cancer….” and reflect on it in the past instead of knowing it is our present reality.
And, for now, it can’t be this way, and ALL of this pains me. ALL OF IT.
I need to suffer and cut myself some slack because I am. I am fucking sad and angry and today, I am bitter.
So I need to show myself some compassion, and do so without giving into pity.
I don’t need to rally to be strong today and I am not going to.
I have asked for some time to be alone to be sad and that is what I am doing.
I am being a friend to myself. I haven’t spoke to anyone about this today.
I have thought about what I would say if I was a friend of mine instead of just me.
If they called me and were sad and hurt and had a terrible day, what would I say??
I would never tell them to suck it up (ok well maybe I would…. but not right out the gate). If someone truly needed my shoulder to lean on I’d give it to them and I’d tell them how sorry I was for their pain. I would feel it with them.
I owe myself that much.
So today I am giving it to myself.
I am talking to myself like a friend.
“Jenny, I am sorry for your pain. It is ok to be sad and not feel strong. It is ok to feel terrible the MRI isn’t better and that you aren’t happy for even the smallest positive/‘stable’ comments. It is ok that you are still afraid of what the future may bring. It is ok to not want to bear this burden any longer and it is ok not to feel like the best cancer mom ever. You are heartbroken for yourself and for Loggie and for Jared and Brody all at the same time and it is ok.”
“Feel that shit Jenny. Own it. let it penetrate and let it bake….feel it all so fucking hard and deeply….. so you can let it go and move forward….”
Feelings can be a paradox, but what I know for sure is there is no space to manage all of them for any length of time.
Each vie for your undivided attention. They are as relentless as a toddler wanting to be heard.
Feelings need to be honored and acknowledged for what they are.
Suffering screams for recognition.
When you are sad, you need to hold yourself tight and give love and when you are happy you need to hold yourself up and ride that fucking wave.
Trying to juggle and tell yourself ‘you should’ is messy. It only causes anxiety and unsettledness and a feeling of inadequacy.
I know that. For sure. I know it to be true.
So today, I am giving myself some much needed compassion while I cry through this blog and through my feelings. It is what it is. My feelings are a paradox.
I appreciate all the love I know each of you following will send our family tonight.
These quotes from German philosopher Friedrich Neitzsche remind me of my sweet Loggie and often give me strength.
I pass them on to you tonight.
“To live is to suffer, to survive is to find some meaning in the suffering.”
“Whoever battles with monsters had better see that it does not turn him into a monster. And if you gaze long into an abyss, the abyss will gaze back into you”
When I started writing this blog again over a year ago, I did so because wanted to share all of the things I have learned in the decade since my child was diagnosed with cancer.
I felt ready to unleash the carefully detailed list of wisdoms I had organized for years and my goal was to incorporate our love of travel with the advice I wanted to share.
I am hopeless when it comes to controlling my urge to analyze. I am always thinking, always writing in my journal and always contemplating.
At times I have been told I am ‘a bit much’ but I have also been told I am a great assessor. I may be both but I like the sounds of the latter. 😜
My innate ability to know what needs to get done serves me well in my life. It has been presentation and communication that have been my challenge. Hence, my obsession with writing and keeping my thoughts in a safe and guarded place began.
Most of what I choose to share on this blog, is mainly about our family, our experience and challenges throughout this cancer journey (God- I despise that word 😩) but what I really want to write about is much deeper than that.
I have a list.
It is a running list and one that I have been working on for almost 12 years. In my pages I call it ‘The 50 things I’ve learned since my kid got sick’.
It actually has 432 items on it (I am exaggerating but you get the point). 😉
This list has been an evolution and over the years these ‘50 things’ have been all about understanding and trusting my own inner discernment. They have shaped who I am today and for the most part what I believe to be my own personal truth.
So, when Logan was re-diagnosed and cancer hit us for the fourth time, I thought I was prepared.
I mean, I have my own fucking list. I should be prepared. Right?
I believed in my epiphanies and thought they were reason for starting this blog. I was ready to share them and turn those 50 blogs into a published book.
I had decade of experience under my belt and in my head I was a veteran and some kind of a cancer-mom guru.
God!!!! I was so in my head that I didn’t know what I didn’t know.
They say, a lesson never goes away until you learn it, and it’s true.
I went into this, list in hand, feeling cocky, ready and full of ego.
What I learned (very quickly) is that cancer hates cocky and the truth is, I had still have no bloody clue how to handle all this. I have so much to learn (and probably always will)❤️
The thing is, life is always changing.
Some of the items on my list have been scratched and replaced. Others are as true for me today as they were when I first acknowledged them. But my biggest realization was that a huge chunk of my wisdom, was just total bullshit that I desperately wanted to be true.
Shit that I thought if I preached enough about would finally sink in and make me evolved enough to fake my way through.
But, unfortunately, fake is not how it works when you are in search of enlightenment, or happiness, or contentment or whatever you want to call it and cancer for the fourth time is not a breeze.
In fact, it is the opposite of a breeze, it is freaking hurricane.
The stakes are higher and we don’t have time to waste. Emotions are more fragile and each day feels very different. Fear vibrates at a much more intense frequency and ‘living in the moment’ is actually a thing.
There is so much less time for bullshit now. There is less time for figuring it all out.
It is go time.
I can’t do complicated drama or worrying what people think or upsetting the apple cart any more because I simply have no space. Yet, ironically every single thing that isn’t working in my life is also amplified.
But I am no longer in a wishy washy state of “what will they think of me?”or “I can’t do that because I don’t want to be judged” and I’m pretty much done with people pleasing so there is some growth to report. 😉😉
Now, instead of my uncertainty, I am ready to share what I have come to know in an honest and truthful way and I ‘get’ that how others view me or my opinion is not mine to own.
It is not because I don’t give a rat’s ass what others think of me (I don’t believe we ever really ‘get’ there or at least I never want to) or not because I want to pass the buck or blame but instead, because I am open to being vulnerable.
And in doing so, I am hoping to let go of the fear of being judged.
You may think I am full of crap and that is OK. I have set my own intention of living outside of my comfort zone and I am going with it. Apparently that is where the magic happens. 😩😩
My hope is that by sharing my thoughts and experiences, dreams and heartbreaks in a truthful way that some of you can relate and connect and that maybe one day these blogs will manifest into something with purpose.
My fear, is the judgment and criticism that my writing will not be ‘good enough’ or people will think I am not qualified to share or solicit this information. Basically, my ego is saying “Who the hell do you think you are?” while my heart is saying “Who the fuck cares, go for it.”
Telling the truth is really, really hard.
In the twelve years Logan’s had cancer, shoveling through the BS to get to the truth has been the hardest thing I’ve ever done. Learning that every single feeling I have starts with me, and isn’t about anyone else is profound.
Being honest enough to sift through the mounds of pain to face my own crap is really all about exposure and vulnerability and no one wants to go there because it is where shame, pity, and fear and all the other gross emotions live. Doing this also doesn’t mean it is going to fix anything- so that in itself makes being exposed even harder.
We all have stories to tell and we all portray certain versions of who we really are to the world. Most of us hold back, and protect ourselves and choose to show the best versions of ourselves.
It’s why social media can be so tricky.
But it is also why it is important to realize the truth is different for each of us.
Having a kid with cancer has no doubt helped me filter through some serious horseshit and come to a place where I can say this is ‘me’ but it has also made me face a whole lot of stuff I really don’t like about myself.
These are my truths, my 50 things (or maybe more 😳) and I am finally ready to share.
Beware, they may or may not resonate with you, so take what you want and leave the rest behind, just try not to be mean about it.😉
Each blog moving forward will incorporate “THE TRUTH IS ” -one of my 50 things.
Of course, I will continue to update you on Loggie’s health and our family’s adventures because it is in line with the goal of this blog. I want to demonstrate that you can have a ‘life all over the map’ and still have fun, while embracing and living a better than ok existence despite challenges.
But this blog is also my own words and I feel an obligation to myself to not brush over the big life lessons I have learned.
So, here goes nothing…..
We are just past midway point in the chemo regimen and Loggie has had another 17 doses of treatment this weekend. We are just back from an epic couple of weeks in Mexico and now she feels like crap. It is hard to watch her go from carefree and happy and alive to sick and fragile and broken so quickly. Cancer sucks.
Mexico was not all perfect but at the same time it was awesome. Logan had good days and bad. There were times when we worried desperately about having her in extreme heat, or the sanitation issues in Sayulita. There were moments when Mexican waiters came running out to the street with a chair and a bottle of water to assist as Logan wobbled unsteadily (her goal was no wheelchair) and there were days when Jared and I squabbled about who had to check PH, flush her line and do her meds because we both wanted a ‘full on’ holiday from cancer.
But overall, it was a one of our best vacations ever because that is how we chose to see it.
You see, THE TRUTH IS (#1) is a quote that is etched in the teen room of the oncology clinic.
For the last year I have been doing some serious personal work (yes I know I have obligations but I am also so much more than a mom/momcologist).
I have been reading self help books, contemplating my connection to the universe, going on unexpected trips to foreign lands, and trying my damnedest to figure out what it is that I want to feel instead of what I want to have. I am trying to let go of expectation, figure out acceptance and learn how to #rollwithit.
And in doing so I came up with ‘my’ word.
Freedom.
Freedom is what I want, but it also seems like the most ridiculous word for a mom with a kid with cancer to choose.
The word in itself feels selfish, unreasonable and like I am setting myself up for failure and disappointment.
I have absolutely no freedom in every sense of the word.
After almost twenty years of parenting I can’t even leave my child alone to go to the grocery store. I have had to give up on my career to be a stay a home mom, which was an identity crisis in itself. I never have any ‘me’ time, and I feel super envious when I hear of couples going away on vacation or doing cool shit together because the Jayrod and I never get any carefree or alone time.
The years Logan was ‘stable’ and I should have had some freedom, I didn’t. Instead, I chose to become a complete maniac. My bad.
I was desperate to use this time appropriately. I focused on getting her set up. So much so, that I missed the opportunity of freedom that was right in front of me.
I clawed into every resource I could find to get her through high school, then accepted into college, and I reached out to those I knew could help her get a job in her field. I fought tooth and nail to get her approved as someone with a permanent disability (and not just a critical illness) so her medication wouldn’t financially devastate her or us. I fought for a small pension to subsidize her working income with the hopes it would give her even more possibility. Jared and I sold our RV and pillaged our savings to buy a condo in Kelowna as a rental with the long-term goal of housing for Loggie.
Freedom has always been my goal.
If I could just get all my ducks in a row, and get all the shit piles sorted then I could finally feel the independence I so desperately desire. Right?
Bull shit.
The truth is, in those five years of ‘stability’ I should have been embracing the freedom I had from cancer but instead I raced around preparing for it so when everything was perfect and fell into place I would finally be able to enjoy it.
Guess what I learned? Nothing in life is ever perfect.
And all I did while in pursuit was make myself really, really depressed.
Yep. I fell into a deep depression.
I wasn’t sleeping. I wasn’t eating properly. My anxiety was absolutely through the roof.
I was seeing, not ONE, but TWO therapists and I was taking handfuls of medications every day just trying to keep my shit together.
On the outside, I looked like the same Jenny, high functioning, demanding, overcompensating and an advocate for Logan but on the inside I was floundering.
Everything was being taken care of, except for myself.
Logan had acquired more freedom then ever. Jared and Brody did too. They were able to take much needed breaks from the hospital and cancer in general to focus on work, school and normalcy.
But for me, I was feeling more trapped than ever.
I obsessed with the idea of freedom yet all I could focus on what how little of it I actually had.
Ironic, right?
And all I learned from it was that freedom is not something that happens once you actually arrive at a certain destination. It is not something that happens once the mortgage is paid, or once the kids move out, or once the freaking brain cancer is cured.
Freedom starts in the space between your own mind and heart and it begins with acknowledging what actually ‘is’.
The profound quote etched in the glass in the oncology clinic at Children’s hospital says
“The last of human freedoms -The ability to chose one’s attitude in a given set of circumstances.” Viktor E Frankl
I read it again this week literally had a gut wrenching AH HA Oprah freakin’ Winfrey moment.
I was sitting with Loggie, and our child life therapist and a mom who has been also been coming to the clinic for 12 years with her son. I looked over at her boy and my girl and as I read the words I felt almost panicked.
I walked outside, down the hall, sat on a chair in the parent shower room and sobbed in private. Everyone had been commenting on how great Logan and I looked returning from holidays. This woman whose son has been fighting some form of cancer since he was six months old seemed incredibly nervous and agitated yet her son seemed so calm and patient. There were parents casually playing with their kids hooked up to chemo, totally normal conversations going on. Nurses laughing and smiling, and the sound of a kid crying during a procedure and all of this was happening around me in such a totally fucking abnormal space and I totally ‘got it’.
I am not in search of the freedom I think I am.
The freedom I desire is already inside of me and it’s all about making a conscious decision to connected with it every day.
It is not about being polly-anna positive.
It is not about waking up in the morning, looking in the mirror and choosing to be happy despite living a total shit show.
It is about being honest, and truthful, and vulnerable and feeling it all. Not sluffing it off.
It is about truth.
It is about seizing the good moments and letting yourself off the fucking hook when things go sideways and you can’t handle it all.
Freedom is about allowing your self the time and space you need. It is being open to opportunity and living from a place of ‘yes’ while focusing on possibility and hope instead of defeat and despair.
The truth is, freedom is not one single thing on the outside of us. We can never arrive at it, no matter how much money we save, or how many trips around the world we take (I still do want to go 🌎)or no matter how much cool shit we acquire.
Freedom is a choice. Everything else stems from there.
I believe freedom is also a feeling. A knowing it’s going to be ok.
That no matter what happens on the outside and even when you have nothing left that feels good you still have a choice on how you are going to respond. It doesn’t matter if your initial response to a situation sucks, you always have another choice. It’s endless and infinite and that in itself is is freedom- BABY!!!
Logan absolutely knows this wisdom. It is why she is so peaceful and accepting of her disease. She has freedom from her cancer despite living through it every day- all her life.
And for me, I am just starting to ‘get’ it but I am grateful for the knowledge.
I am a work in progress, but I am also one step closer to living the full potential of my word and that in itself feels freeing enough.
Today officially marks the half way point in Loggie’s chemotherapy protocol.
76 doses down. 76 doses to go.
I think today is supposed to feel like we’ve reached some sort of pinnacle and it is all down hill from here.
The truth is, however, it has felt like it has been ‘all down hill’ for so long that I have forgotten what it feels like to think going downhill could be a good thing.
The days just are what they are.
Each day is different.
Some days are ok. Some days might even border good (relative) and some days are just total shit.
I am sure Logan’s medical team think I am crazy, because on the ‘total shit’ days even I know I can be a complete lunatic.
There is no rational when your kid is sick.
I call in to the hospital but my calls are always the same.
“Hi, Ummm, sooooo, this treatment is stupid…..It is totally not working and I hate it. Yes, I know I have to give it time but A. I want to know what your back up plan is because B. This is not good enough and C. You can’t expect us to accept this BS or do this on our own anymore (insert tears and hives). P.S. I want you to know am totally losing my shit”
There is always a long pause, and I am sure a slight eye roll at the other end of the phone but somewhere between those tears, and hives and my stuttering and shaking, and swearing somehow I am always talked off the ledge.
Or at the very least I am pacified enough to be reminded- the goal has always been to hit the half way mark of this chemotherapy protocol and then reassess.
So, now we’ve hit the goal.
We are officially at the half way mark (gold star?? victory lap??) and now I wonder what does that even mean?
I think it means we are at fork in the road.
Do we keep on traveling this path? Or do we take another direction?
Five weeks ago, I would have said with definite truth we would NOT continue doing this chemotherapy after we hit the half way mark.
Logan was not getting better, in fact, I believed wholeheartedly she was getting worse by the day.
No one disagreed with me, which only heightened my fear.
Every visit to the hospital I was encouraged to explore our options at Canuck Place. Our trusted therapist even suggested our sessions needed to shift as we prepared to accept the inevitable and as I wrote in my last blog, I felt like I was having nothing but hard conversations.
Especially with myself.
The start of Logan’s seizures have taken an incredible toll not only on her physically but on all of us mentally.
Not going to lie, this latest blow has been torture.
And
Five weeks ago, I just felt like I couldn’t do any of ‘it’ anymore.
I had a breakdown.
A complete and utter, fall apart breakdown, and so did Brody, and so did Jared.
For me, I couldn’t stop crying.
I must of cried a million tears.
It started in the parking lot of the hospital and I felt like a ton of bricks had been thrown at me.
I was shattered.
It was raining and Logan needed blood work done. There was no handicap parking spot and we needed to take the wheel chair across the parking lot in the slush, and snow and sleet.
I cried as I struggled in the freezing cold to pull that chair I loathe out of my car and stuff her in it. I cried as she had her tests done, watching them put a warm compress on her veins. I cried as I drove home through ridiculous traffic trying to calculate how many kilometres I’ve driven back and forth. And when I got home and finally got Logan settled back into her warm bed I cried as I returned to sit alone in my parked car just to be alone.
It was all too much.
Logan could hardly be moved out of bed. She could hardly eat anything. She was choking on her food, having difficulty with her breathing, and her walking was getting worse. She hardly engaged with any of us and I felt desperate.
Brody was also not his usual, sweet self. He was bitter and angry and nonstop back talking me and Jared was like a bomb with a lit fuse.
No matter what anyone said or did, he seemed like he was going to explode at any moment. Edgy, exhausted, angry, and so incredibly irritable. Honestly, he is usually pretty easy going but I couldn’t even look at him the wrong way and he’d snap at me.
Yep.
The inevitable collapse of The Lay family…..totally happened.
And all I could do was cry my way through it.
“Fuck this” I thought. “Fuck it.”
I didn’t know what to do or where to start.
So, I did what I always do and I started to write.
Not a blog. Not to all of you, but to myself.
I picked up my journal and I started to go back to basics.
How did I want to feel in all of this?
It took some time to figure that one out because obviously I don’t want any of this, but once I found a few words I started taking baby steps to explore what I needed to do and how I was going to get there.
Here is what I came up with.
“Tell Logan the truth. She is dying.”
Oh Fuck.
“Now, tell her how her dying is making everyone in the family feel”
Oh Fuck, Fuck, Fuck.
“Also, take Brody for some alone time and force him to talk to you”(Insert- know ahead of time you are going to feel like an even shittier mom 😩)
“And book a couples therapy session and get our therapist to tell Jared he needs to get his shit together, and maybe focus on what he can do instead of what he can’t ” (Not entirely what happened 😳)
But it was a start.
And so it went.
I called a family meeting.
I told Logan- straight up- I am pretty sure she was dying.
We all cried.
Like, really cried.
Like, actually fucking bawled our faces off.
Thinking about you all reading this I can almost feel judgement. You might think this approach is harsh, or not my right, or negative or like I was ripping away her hope, but I am her mother and I just knew at the very depths of my soul this was the right thing to do.
I had to be the one to tell her.
She needed to hear it. Hardcore. No fluff.
I could see her slipping away before my eyes and I feared she thought time was still on her side when the reality is, we all know it’s not.
She is going into autonomic system failure and the only thing that will help her now is hard work, moving her body, and pushing herself. We need to work against the clock. Buy time while this chemo does what it can.
Her cancer is only one part of her problem.
The doctors all agree unless we do something to help combat her blood pressure issues, the seizures will continue and other health problems will also manifest. Ultimately if we don’t retrain her brain and get her moving it may not be the cancer that she succumbs to. I just can’t bear to live with myself and let that happen.
But I also knew it wasn’t going be an easy task to get her moving.
It had been five months of her being stagnant and I needed to shock her into understanding her reality.
Extremely low BP, plus feeling like crap from chemo and low blood counts combined with the sadness and pity she felt around her would make pulling her out of this slump difficult.
This wasn’t going to be a dramatic turnaround. We all needed to be prepared but I also knew it was imperative we tried.
It was ‘go time’ as Jared put it.
Do something, or give up.
I knew I had to be harsh and push her or there wouldn’t be any quality of life (god I hate that term) in time she has left.
She asked me how long I thought she had to live.
I told her at the rate she was going I doubted she would make her 20th birthday. Her birthday is June 20th. It is supposed to be her champagne 🥂 celebration this year- go figure.
We cried some more.
Then, Jared, Brody and I each took a turn telling her how her dying was making us feel and how it would affect our lives.
Listening to Brody was the hardest. He basically just cried and begged her not to die. But being the kid he is, he also presented a work out regimen to help her get stronger (and an action plan for our doctors, and the new surgeon at VGH👊🏻👊🏻😉)
It was in this moment, I could feel, we all had a shift.
Logan looked at Jared and I and through her tears she asked “What do I have to do to live?”
Then, she looked at Brody and said “ Don’t worry buddy, I am not ready to go yet. I will try and get stronger”
And so it started.
The very next morning we mapped out a plan to get her up and get her moving and eating whole foods and we made this plan to work around our own realistic goals and terms.
Not going to lie, it has been the hardest, most draining 5 weeks of all of our lives.
And most days, everything has totally sucked
BUT,
We’ve kept at it and there is progress to report.
So much progress!!!!
Logan is now eating 3 meals a day by mouth. She is choosing her meals (always smoothies for breakfast) and I although I am so tired of cooking random shit, she is almost getting enough calories to remove the overnight feeds. Most days she gets only fluids and electrolytes through the tube.
She requires 3000mls of fluids a day to help her blood pressure. Ensuring it happens every day is a big task within itself.
Second, we started an exercise routine (otherwise known as the JJB home physio program) and each day two or three times we get her out walking, doing squats, and lunges and using her hand weights. Sometimes, just for fun, we have a dance party.
But, regardless of fun, rain or shine, we commit to the walking.
No excuses, it doesn’t matter if we are having a bad day or the weather sucks (which it always does 😩) we go.
When the walking first started she couldn’t even make it from the house to the first lamp post without needing her wheel chair.
The first time we tried to walk up a small incline she needed to sit down on the road twice. She was shaking and crying. Jared and I both had to hold her up.
Now, almost five weeks later, she can do the entire walk (over 1.5 km a day) without her wheel chair and she is now attempting lunges on the sidewalks.
Progress. Yes!
Huge progress considering just over a month ago I told her, and I completely believed, she wouldn’t live for another three.
Now, today, I feel like she could, maybe, just possibly, once again, see better days.
We still have so far to go…
But this is a start.
Most days start out the same. Her blood pressure in the morning vibrates somewhere between 50/40 and 70/50.
It is a two hour process to get her up and enough fluids into her and her meds leveled out so that she is stable enough to start pushing herself to exercise, walk and eat. It is a delicate balance of not pushing too hard while her body is preparing itself. Without enough time and support she can have a seizure and then our efforts for the day are sabotaged. There are times when we are all tired and we want to skip exercise but we do it any way.
The days she does have a seizure are exceptionally hard to stay positive and chemo days are the absolute worst to try and get through but some how we manage to push forward.
Logan is still tired all the time, but I can see she is also trying harder every day and this is what is motivating us all.
I see glimpses of the old Loggie and I feel alive and inspired and encouraged.
Brody is also doing better, he comes on every walk he can and when I hear him arguing with his sister about stupid shit, like who plays ‘that song’ I actually feel happy because there is just a little bit more normal these days in our lives, whatever that is.
The JayRod has taken up a new hobby of making industrial shelving and furniture and he’s also started selling them which is alleviating a bit of money stress. Sales in his industry are such a grind so this is a a win, win.
What I learned (when I listened) is part of the reason he’s so stressed has to do with the additional costs associated with Logan’s illness. He doesn’t want us to have to give up the ‘fun stuff’ we do (who does??🍻) so this new endeavor is giving us a few extra bucks and reducing some of the stress.
We both agree, now, more than ever, our 90 day plan of escape and cool experiences isn’t just ‘a nice to do’, it feels like a necessary part of the treatment regimen.
He’s also decided to join crossfit.
So, again win, win. Not only will I have a super hunky ripped hubby by summer, I think it will be good for his mental health.
Hopefully, fewer explosions all around.
And so it goes.
We continue to try our best- even when it sucks.
The half way point is officially here.
It has been a grueling struggle to reach this milestone and we have literally been clawing every inch of the way but I am proud because we have not given up.
We refuse to give up.
Instead, we are taking a time out.
To regroup.
To recover
and to restore.
We decided to give our doctors some time to review Log’s progress and to discuss what they think moving forward. Maybe they will have new plan when we get back. Maybe this won’t be the half way mark of this chemo but the beginning of something new.
Who knows….. but either way, we as a family need another time out, and a break from all of this cancer crap.
So, we are enacting ‘The 90 day Reid Adkins Program’ and we getting the heck out of dodge. Period.
We are going back to Mexico after Loggie recovers from this dose of chemo (next week) and we are happy our oncologist agrees this is the best possible plan we could have.
She actually cried today when she saw Logan walk into her office without the wheelchair. She hugged super tight when I showed her the videos of Logan lunging and she told me how very proud she was of us all.
She also shared with me that since I haven’t been entirely honest with her about our plan to jet away at the half way point, Logan’s MRI would have to wait until the week we came back from holidays instead of next week before we go.
I got a bit squirrely, but she calmed me down.
“I don’t want you to spend your holiday analyzing pictures and test results. You do that enough” she said, “I want you to have a few cold margaritas, sit in the sun and be with your family. Look at your daughter, she is the only perspective you need right now”
Of course, I cried. (Again)
God, we’ve come along way in our relationship. I pretty much love her more than life and think she’s totally rad. (This week anyhow 😜)
We are also bringing someone to help us on our trip so we don’t have to juggle everything all on our own and we can come back feeling like we’ve had an actual break.
YES, again…progress. BOOYA!
I am learning I don’t have to do it all on my own to be a really good mom. There are no awards for overachieving and running myself into the ground. (Who knew?)
Auntie Betty has agreed to fly down at the half way point of the vacation so Jared and Brody and I can spend some time together surfing, and maybe doing some yoga.
Loggie is thrilled. Our last trip was great but she said she always feels like she holding us back from enjoying our favorite things.
The truth is…. she is right.
Cancer does hold you back, and it sucks, but cancer also pushes you, expands you, and at times, it also leaves you needing nothing more than a solid, super indulgent, and super fun, release.
We chose perfect words for this year so we might as well live them, I guess.
Maybe this is just a dream.
