Living in Limbo

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

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

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

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

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

She is right.

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

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

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

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

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

Then I went shopping and bought two new bikinis.

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

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

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

How could it not?

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

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

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

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

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

We both constantly feel like we are failing.

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

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

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

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

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

BUT…..with all that said…..

I am NOT sitting on a beach in Mexico today.

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

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

Not me.

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

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

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

It’s been a really shitty few weeks.

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

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

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

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

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

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

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

Not a good start to the meeting.

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

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

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

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

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

So now what?

Well, to be honest we don’t know.

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

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

We talked about options.

They are very limited.

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

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

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

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

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

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

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

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

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

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

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

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

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

This week has been hell.

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

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

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

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

Logan says she isn’t ready.

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

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

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

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

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Dodging bullets

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

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

You pray to hear the click.

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

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

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

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

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

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

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

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

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

I gasped.

“Do you know who I am?”

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

I started to cry.

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

It didn’t phase her.

She was so confused.

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

We were still in her bed.

I panicked.

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

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

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

Nothing improved, but nothing stood out.

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

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

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

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

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

Cancer.

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

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

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

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

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

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

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

What is next? How will we get through it?

We all wondered and tried to prepare for the worst.

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

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

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

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

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

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

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

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

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

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

Logan paused and looked directly at me….

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

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

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

Elaine and I both cried at the thought.

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

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

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

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Anyhow…..

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

Phew…..😩😩😩😩😩

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

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

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

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

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

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

Bullet dodged.

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

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

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

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

Childhood cancer is a family disease.

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

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

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

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

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

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

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

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

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

It’s hard to live like this.

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

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

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How much it hurts

 

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

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

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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.

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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.

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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.

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

The lump is like a fucking dam.

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

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

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

This is not about that.

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

But here is a thought….

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

No dress rehearsal- This is our life. ❤️

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Thanksgiving minus the thanks

I woke up this morning and reached for my journal.

I felt annoyed.

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

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

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

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

I felt nothing.

Not one word of thankfulness flowed to paper.

I looked out the window. It was raining. 🙄

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

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

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

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

It is elusive. It comes and goes.

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

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

All of it.

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

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

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

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

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

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

But this isn’t about that.

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

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

No one wants to hear it.

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

It got me thinking.

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

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

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

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

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

We were admitted today.

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


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

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

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

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

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

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

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

So, here goes my attempt….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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I don’t know how you do it

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

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

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

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

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

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

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

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

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

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

‘Gloved up’ and giving chemo on the fly.

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

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

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

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

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

It really got me thinking….

How the hell do I cope?

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

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

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

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

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

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

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

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

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

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

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

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

“I don’t know how you do it…..”

Fuck me.

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

I pondered this epiphany as I sat outside the door.

Compassion is such a complicated process.

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

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

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

I get it.

But the truth is….

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

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

It all hit me like a ton of bricks.

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

Denial.

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

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

No big picture over here….

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

Anxiety comes on so strong, it is literally painful.

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

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

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

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

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

Give it to me…

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

I cope by planning adventure.

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

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

It is what we want to do.

Have experience and fun. Period.

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

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

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

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

But it is NOT a bucket list.

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

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

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

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

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

Travel has also been a good form of bribing Logan.

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

Plus, she is also pretty wise.

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

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

I am human.

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

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

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

You have to face it.

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

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

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

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

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

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

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

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

And

B. It is a process- all of it.

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

Simply, for one reason and one reason only…

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

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

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

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

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

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

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

1. No one knows what to do

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

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

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

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

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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.

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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 ❤️

 

 

 

 

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Do Epic Sh*t

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.

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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!)

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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.

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“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.

IMG_8363Maybe 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….

  1. Cancer
  2. Treatment
  3. Medication
  4. Work
  5. School
  6. 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 😉

IMG_8720

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. 😘❤️

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Some things never get easier~ MRI day.

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?

 

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The truth is #3 Not feeling sorry for yourself is part of the struggle.

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…

 

Goodness happens despite the shit.

Every. Single. Day.

We are continuing to hang in there,

#rollwithit

❤️

J

 

 

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The truth is (#2) Feelings can be a paradox.

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”

And we will stumble forward….

With Love,❤️❤️

J

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