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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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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The Truth is~ Freedom (#1)

When I started writing this blog again over a year ago, I did so because wanted to share all of the things I have learned in the decade since my child was diagnosed with cancer.

I felt ready to unleash the carefully detailed list of wisdoms I had organized for years and my goal was to incorporate our love of travel with the advice I wanted to share.

I am hopeless when it comes to controlling my urge to analyze. I am always thinking, always writing in my journal and always contemplating.

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At times I have been told I am ‘a bit much’ but I have also been told I am a great assessor. I may be both but I like the sounds of the latter. 😜

My innate ability to know what needs to get done serves me well in my life. It has been presentation and communication that have been my challenge. Hence, my obsession with writing and keeping my thoughts in a safe and guarded place began.

Most of what I choose to share on this blog, is mainly about our family, our experience and challenges throughout this cancer journey (God- I despise that word 😩) but what I really want to write about is much deeper than that.

I have a list.

It is a running list and one that I have been working on for almost 12 years. In my pages I call it ‘The 50 things I’ve learned since my kid got sick’.

It actually has 432 items on it (I am exaggerating but you get the point). 😉

This list has been an evolution and over the years these ‘50 things’ have been all about understanding and trusting my own inner discernment. They have shaped who I am today and for the most part what I believe to be my own personal truth.

So, when Logan was re-diagnosed and cancer hit us for the fourth time, I thought I was prepared.

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I mean, I have my own fucking list. I should be prepared. Right?

I believed in my epiphanies and thought they were reason for starting this blog. I was ready to share them and turn those 50 blogs into a published book.

I had decade of experience under my belt and in my head I was a veteran and some kind of a cancer-mom guru.

God!!!!  I was so in my head that I didn’t know what I didn’t know.

They say, a lesson never goes away until you learn it, and it’s true.

I went into this, list in hand, feeling cocky, ready and full of ego.

What I learned (very quickly) is that cancer hates cocky and the truth is, I had still have no bloody clue how to handle all this. I have so much to learn (and probably always will)❤️

The thing is, life is always changing.

Some of the items on my list have been scratched and replaced. Others are as true for me today as they were when I first acknowledged them. But my biggest realization was that a huge chunk of my wisdom, was just total bullshit that I desperately wanted to be true.

Shit that I thought if I preached enough about would finally sink in and make me evolved enough to fake my way through.

But, unfortunately, fake is not how it works when you are in search of enlightenment, or happiness, or contentment or whatever you want to call it and cancer for the fourth time is not a breeze.

In fact, it is the opposite of a breeze, it is freaking hurricane.

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The stakes are higher and we don’t have time to waste. Emotions are more fragile and each day feels very different. Fear vibrates at a much more intense frequency and ‘living in the moment’ is actually a thing.

There is so much less time for bullshit now. There is less time for figuring it all out.

It is go time.

I can’t do complicated drama or worrying what people think or upsetting the apple cart any more because I simply have no space. Yet, ironically every single thing that isn’t working in my life is also amplified.

But I am no longer in a wishy washy state of “what will they think of me?”or “I can’t do that because I don’t want to be judged” and I’m pretty much done with people pleasing so there is some growth to report. 😉😉

Now, instead of my uncertainty, I am ready to share what I have come to know in an honest and truthful way and I ‘get’ that how others view me or my opinion is not mine to own.

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It is not because I don’t give a rat’s ass what others think of me (I don’t believe we ever really ‘get’ there or at least I never want to) or not because I want to pass the buck or blame but instead, because I am open to being vulnerable.

And in doing so, I am hoping to let go of the fear of being judged.

You may think I am full of crap and that is OK. I have set my own intention of living outside of my comfort zone and I am going with it. Apparently that is where the magic happens. 😩😩

My hope is that by sharing my thoughts and experiences, dreams and heartbreaks in a truthful way that some of you can relate and connect and that maybe one day these blogs will manifest into something with purpose.

My fear, is the judgment and criticism that my writing will not be ‘good enough’ or people will think I am not qualified to share or solicit this information. Basically, my ego is saying “Who the hell do you think you are?” while my heart is saying “Who the fuck cares, go for it.”

Telling the truth is really, really hard.

In the twelve years Logan’s had cancer, shoveling through the BS to get to the truth has been the hardest thing I’ve ever done. Learning that every single feeling I have starts with me, and isn’t about anyone else is profound.

Being honest enough to sift through the mounds of pain to face my own crap is really all about exposure and vulnerability and no one wants to go there because it is where shame, pity, and fear and all the other gross emotions live. Doing this also doesn’t mean it is going to fix anything- so that in itself  makes being exposed even harder.

We all have stories to tell and we all portray certain versions of who we really are to the world. Most of us hold back, and protect ourselves and choose to show the best versions of ourselves.

It’s why social media can be so tricky.

But it is also why it is important to realize the truth is different for each of us.

Having a kid with cancer has no doubt helped me filter through some serious horseshit and come to a place where I can say this is ‘me’ but it has also made me face a whole lot of stuff I really don’t like about myself.

These are my truths, my 50 things (or maybe more 😳) and I am finally ready to share.

Beware, they may or may not resonate with you, so take what you want and leave the rest behind, just try not to be mean about it.😉

Each blog moving forward will incorporate “THE TRUTH IS ” -one of my 50 things.

Of course, I will continue to update you on Loggie’s health and our family’s adventures because it is in line with the goal of this blog. I want to demonstrate that you can have a ‘life all over the map’ and still have fun, while embracing and living a better than ok existence despite challenges.

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But this blog is also my own words and I feel an obligation to myself to not brush over the big life lessons I have learned.

So, here goes nothing…..

We are just past midway point in the chemo regimen and Loggie has had another 17 doses of treatment this weekend. We are just back from an epic couple of weeks in Mexico and now she feels like crap. It is hard to watch her go from carefree and happy and alive to sick and fragile and broken so quickly. Cancer sucks.

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Mexico was not all perfect but at the same time it was awesome. Logan had good days and bad. There were times when we worried desperately about having her in extreme heat, or the sanitation issues in Sayulita. There were moments when Mexican waiters came running out to the street with a chair and a bottle of water to assist as Logan wobbled unsteadily (her goal was no wheelchair) and there were days when Jared and I squabbled about who had to check PH, flush her line and do her meds because we both wanted a ‘full on’ holiday from cancer.

But overall, it was a one of our best vacations ever because that is how we chose to see it.

You see, THE TRUTH IS (#1) is a quote that is etched in the teen room of the oncology clinic.IMG_6052.JPG

For the last year I have been doing some serious personal work (yes I know I have obligations but I am also so much more than a mom/momcologist).

I have been reading self help books, contemplating my connection to the universe, going on unexpected trips to foreign lands, and trying my damnedest to figure out what it is that I want to feel instead of what I want to have. I am trying to let go of expectation, figure out acceptance and learn how to #rollwithit.

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And in doing so I came up with ‘my’ word.

Freedom.

Freedom is what I want, but it also seems like the most ridiculous word for a mom with a kid with cancer to choose.

The word in itself feels selfish, unreasonable and like I am setting myself up for failure and disappointment.

I have absolutely no freedom in every sense of the word.

After almost twenty years of parenting I can’t even leave my child alone to go to the grocery store. I have had to give up on my career to be a stay a home mom, which was an identity crisis in itself. I never have any ‘me’ time, and I feel super envious when I hear of couples going away on vacation or doing cool shit together because the Jayrod and I never get any carefree or alone time.

The years Logan was ‘stable’ and I should have had some freedom, I didn’t. Instead, I chose to become a complete maniac. My bad.

I was desperate to use this time appropriately. I focused on getting her set up. So much so, that I missed the opportunity of freedom that was right in front of me.

I clawed into every resource I could find to get her through high school, then accepted into college, and I reached out to those I knew could help her get a job in her field. I fought tooth and nail to get her approved as someone with a permanent disability (and not just a critical illness) so her medication wouldn’t financially devastate her or us. I fought for a small pension to subsidize her working income with the hopes it would give her even more possibility. Jared and I sold our RV and pillaged our savings to buy a condo in Kelowna as a rental with the long-term goal of housing for Loggie.

Freedom has always been my goal.

If I could just get all my ducks in a row, and get all the shit piles sorted then I could finally feel the independence I so desperately desire. Right?

Bull shit.

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The truth is, in those five years of ‘stability’ I should have been embracing the freedom I had from cancer but instead I raced around preparing for it so when everything was perfect and fell into place I would finally be able to enjoy it.

Guess what I learned? Nothing in life is ever perfect.

And all I did while in pursuit was make myself really, really depressed.

Yep. I fell into a deep depression.

I wasn’t sleeping. I wasn’t eating properly. My anxiety was absolutely through the roof.

I was seeing, not ONE, but TWO therapists and I was taking handfuls of medications every day just trying to keep my shit together.

On the outside, I looked like the same Jenny, high functioning, demanding, overcompensating and an advocate for Logan but on the inside I was floundering.

Everything was being taken care of, except for myself.

Logan had acquired more freedom then ever. Jared and Brody did too. They were able to take much needed breaks from the hospital and cancer in general to focus on work, school and normalcy.

But for me, I was feeling more trapped than ever.

I obsessed with the idea of freedom yet all I could focus on what how little of it I actually had.

Ironic, right?

And all I learned from it was that freedom is not something that happens once you actually arrive at a certain destination. It is not something that happens once the mortgage is paid, or once the kids move out, or once the freaking brain cancer is cured.

Freedom starts in the space between your own mind and heart and it begins with acknowledging what actually ‘is’.

The profound quote etched in the glass in the oncology clinic at Children’s hospital says

The last of human freedoms -The ability to chose one’s attitude in a given set of circumstances.Viktor E Frankl

I read it again this week literally had a gut wrenching AH HA Oprah freakin’ Winfrey moment.

I was sitting with Loggie, and our child life therapist and a mom who has been also been coming to the clinic for 12 years with her son. I looked over at her boy and my girl and as I read the words I felt almost panicked.

I walked outside, down the hall, sat on a chair in the parent shower room and sobbed in private. Everyone had been commenting on how great Logan and I looked returning from holidays. This woman whose son has been fighting some form of cancer since he was six months old seemed incredibly nervous and agitated yet her son seemed so calm and patient. There were parents casually playing with their kids hooked up to chemo, totally normal conversations going on. Nurses laughing and smiling, and the sound of a kid crying during a procedure and all of this was happening around me in such a totally fucking abnormal space and I totally ‘got it’.

I am not in search of the freedom I think I am.

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The freedom I desire is already inside of me and it’s all about making a conscious decision to connected with it every day.

It is not about being polly-anna positive.

It is not about waking up in the morning, looking in the mirror and choosing to be happy despite living a total shit show.

It is about being honest, and truthful, and vulnerable and feeling it all. Not sluffing it off.

It is about truth.

It is about seizing the good moments and letting yourself off the fucking hook when things go sideways and you can’t handle it all.

Freedom is about allowing your self the time and space you need. It is being open to opportunity and living from a place of ‘yes’ while focusing on possibility and hope instead of defeat and despair.

The truth is, freedom is not one single thing on the outside of us. We can never arrive at it, no matter how much money we save, or how many trips around the world we take (I still do want to go 🌎)or no matter how much cool shit we acquire.

Freedom is a choice. Everything else stems from there.

I believe freedom is also a feeling. A knowing it’s going to be ok.

That no matter what happens on the outside and even when you have nothing left that feels good you still have a choice on how you are going to respond. It doesn’t matter if your initial response to a situation sucks, you always have another choice. It’s endless and infinite and that in itself is is freedom- BABY!!!

Logan absolutely knows this wisdom. It is why she is so peaceful and accepting of her disease. She has freedom from her cancer despite living through it every day-  all her life.

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And for me, I am just starting to ‘get’ it but I am grateful for the knowledge.

I am a work in progress, but I am also one step closer to living the full potential of my word and that in itself feels freeing enough.

❤️🌎✌🏻

 

 

 

 

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Do your best (even if it sucks)

It was bound to happen….

The crash.

I could feel it coming on, festering just below the surface.

Anxiety is like that.

Choking.
Smothering.
Pressing.

You swallow it down, trying to avoid it. Thinking if you treat it like a spoiled child and  don’t give it any attention sooner or later it will stop being so disruptive, right?

Then, one day you find yourself in your therapists office unexpectedly gasping for air.

Puking.
Bawling.
Collapsing.
Shaking.

Crumpled up on her sofa, uncontrollable.

Where did this come from?

You try to make sense of what is really happening…
Is this what the result of denial feels like?

I thought Mexico might help stop the meltdown from coming. I felt emotional and shaky for weeks…

Maybe, I was just over tired and needed some sunshine. Maybe all I needed was to get away, run away from reality and have a change of scenery and a few margaritas?

No matter how bad things are, they are always better in Mexico….right? (Yes they are 😉☀️)

 

But the thing is, Mexico is only temporary.
Mexico isn’t reality, and coming home after escaping reality for a few days has made the return to the norm exceptionally tough.

It is MRI week, so that doesn’t help.

Ugh.

The first MRI since Logan’s relapse and I’ve got scanxiety like I’ve never had it before. It feels like EVERYTHING, her whole life and our whole world is riding on the pictures we are about to see.

Is the chemo helping? Will we have to change course? Is there a back up plan?
Will there be an improvement?

I don’t know-

And thinking about it all, trying not to get too far ahead, and keep my emotions in check, is so incredibly fucking hard.

I want to scream. I want to beg, I want to run yet I feel paralyzed inside- out of control, yet motionless and helpless.

It is out of my hands and it will be what it will be. I know in theory I have to accept what ‘is’ but inside I am fighting it- all of it.

This can’t be the truth…Our life?  It’s not possible…I hate this.
I want us to have freedom from cancer but I’m scared to ask for freedom incase what we get is not the freedom I long for.

I don’t know what to wish for.

What to ask for?

How to be ok?
Pictures don’t do justice for how Log is really doing each day.

She looks amazing in photos and has this incredible ability to light up the camera but a picture is just a moment in time.

There have been improvements, I think?

I seem to ask everyone what they think too.
The answer is always iffy. Maybe in some ways she is better? But maybe just doesn’t seem good enough…

Overall, I know.

She is just so tired-

All the time.

95% of all her nutrition and fluids are still going through the tube- she’s still not eating or drinking anywhere near enough to sustain herself and when we check her blood pressure because she’s complaining of symptoms, the numbers we see are terrifying.

There are times when I hear her gasp for air or I see her shaky little hand having difficulty opening something, or she’s off balance, or slurs her words and I feel sheer terror because I know some of her symptoms are indeed worse.

I feel the panic- the restlessness- my mouth feels dry, my heart skips a beat. I am jittery and I can feel it creeping in to me.

The fear.

I try my best to pull myself together and avoid the complete spiral off the deep end.
Thank god I still have the strength to control that.

I clean.
I organize
And I try to keep busy, making plans, making food, making a mess so I can clean it up.
Moving, for me is imperative.

When I stop there is only time for thinking….

and thinking is just too hard.
I tell myself-

“Don’t go there.
The chemo is working.
What you are seeing is inflammation from the destruction of tumour. The symptoms would be the same….
Don’t go there, Jenny….
It’s too scary….

You can’t afford to fall apart.
Stay strong for Brody, Jared, Logan. Think positive.

Do your best (even if it sucks)
DON’T fall apart. DON’T cry. DON’T start worrying, panicking or letting the bad thoughts in.
They are only thoughts. Not facts.
Wait for the facts.
Make a solid plan-
Keep moving”

And so it goes.

Then, there is the flood of guilt. Such a useless emotion- but it’s also always lurking, right behind the fear, in front of the sadness.

“I wish I was more grateful for the time Logan was stable. Why didn’t I let it all be good enough? Why did I have to feel so angry for the challenges Logan faced over the past few years when I could have just accepted things for what they were?”

The tears flow

“I wish I would have enjoyed those stable years more.
Maybe I shouldn’t have pushed her so hard. Been so strict- or tried so hard to think that her life could be normal?
I promise if we get another chance I will do better….”

**** And just like that I am forced to pause from writing because Loggie starts puking 😩and I’m pulled back into the moment****

I guess it is a message from the universe-jolting me back.

I get it.

“Stay present, Jenny.
Rub Loggie’s back.
Check the tube.
Call the hospital.
Arrange her meds for the day (add extra anti-nausea)
Get Logan’s pre chemo blood work done.
Check her blood pressure
Do a bolus
Throw in a load of laundry,
Vacuum upstairs
Change the sheets.
Check the order of feed bags that arrived
Clean last nights feed bag
Call special authority about meds not covered. WTF?
Get the wheelchair receipt
Contact benefits
Make sure chemo is ready for pick up.
Eat.
Shave your legs
Breathe.
Breathe deeper.
Keep moving.
Do tangible things.
Stay strong.
Think of something fun to do today.
Don’t fall apart, Jenny-
Under no circumstances can you fall apart.
Keep your shit together.
Find a new tenant for our rental property??(SHIT not this now😩)
Smile.
Remember, people are rooting for your family
They think you got this–believe them damnit!
One more deep breath….”

And so it goes–

Up and down like a yoyo it is a rollercoaster ride.
The reality that every single person/family who lives with cancer knows- every day is different and life, emotion, and your own bloody sanity can truly be all over the map.
MRI and round 3 of chemo starts tomorrow.

2017  is only 17 days in and it already feels like it has been a long year.

Can we go back to Mexico now  🇲🇽 🌴☀️🍹?

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Balancing fear and hope

In the past ten days the entire world has been completely flipped upside down, including ours.

Trump was elected president and with that my entire theory on hope was thrown out the window.

Yes, the unimaginable can happen.

I guess if any one should know, after all these years of childhood cancer, I should.

How could I be so naive to think hope and humanity would actually prevail?

Why do I even believe in the possibility to overcome unacceptable situations?

Clearly I should know by now, sometimes they just can’t be overcome.

I have always preached “The only thing stronger than fear is hope.”

This week I have learned it is pretty easy to preach those words when the past 11 years we’ve always been lucky enough to find a way through our most difficult times.

Logan, so far, has beat every odd and we’ve skirted our way through devastation, (and around the world) so many times I think I convinced myself that hope was really enough.

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The past few months, however, my faith in this statement has been tested to the brink.

Every day feels like an absolute blow. Logan’s blood pressure hasn’t consistently improved and despite all of our attempts to manage her symptoms we reached the end of our rope.

There is no more medication that will help her right now.

I’ve heard words like “There is nothing more we can do, there are no right answers, I don’t know what to tell you, and I wish I could give you better news”

I’ve sat down with teams of specialists and BC Children’s Hospital’s top doctors, to pick their brains with all the questions I have stored in my mind.

No one knows what to say.

We’ve never been here before.

There are no answers.

It breaks my heart to think of every roadblock Logan has faced and what could happen.

It seems so impossible to be here, again.

And, although,  I can’t accept where we are at, by the same token, it is all that I can do is accept where we are at and move forward.

And hope.

Which feels like such bullshit.

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But this is our reality and fear seems to be winning these days.

I try not to think about the odds, or the statistics. I cling to the fact that Logan’s success rate for overcoming cancer so far has been 100%.

I am desperately trying to be grateful for what I have. I have faith in all of our doctors, and all the prayers coming our way, really I do….

But

Nothing seems to be enough. I am just so fucking scared.

All.The.Time.

Today is Day 27 in this bloody hospital (day 36 in the past 8 weeks).

I now know all the nurses by name and what rotation they are on. It is no longer a secret I am drinking wine in a hydro flask and the beeping of her IV/ feed pump have become the rhythm to the sound track of our day.

I have remembered how to navigate a feeding tube and can bolus liquid in like a champ.

The shock of relapse is fading and my brain fog is lifting, it is replaced with anxiety, sadness and disbelief. This can’t be happening.

I can recite the names of her new medication and am starting to remember the scheduled times we need administer all the drugs. Part of me feels confident getting back into the swing of my role as a momcologist.

“You’ve done this before.” I chant to myself before bed each night.

But the other part of me is just terrified.

“This is so f*cked up, how am I going to do all of this?” I find myself saying each morning after another sleepless night.

Despite some small victories and improvements the mountain of setbacks we’ve faced since being re-diagnosed is overwhelming.

There are new symptoms we have never had to face before and the unknown is what worries me the most.

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I fear it all.

But, by far, waiting is the hardest part.

My job is to keep Logan safe and comfortable and hope like hell the chemo is doing its job by shrinking the tumour without causing permanent damage to her brainstem.

For now she will need to use a wheelchair most the time now. She can’t stand or walk for long periods of time. She has fallen and fainted and with low platelets and a brain tumour, we just can’t take the risk of her hitting her head.

She is weak, and tires so easily. The smallest of task is monumental for her.

It has been difficult to keep her nausea under control, her appetite up and her headaches on a pain scale below 5.

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But it is the damn blood pressure that continues to be her biggest challenge. It is now randomly bottoming out and over the weeks we’ve seen the ‘drops’ intensify, leaving her confused and disorientated.

A couple of nights ago proved to be one of the hardest moments I’ve ever experienced as a mother.

Logan didn’t know who I was.

The cardiologist explained that her blood pressure likely dropped so low, there wasn’t enough oxygen for her brain to work properly. Her mind couldn’t process what was happening around her.

She didn’t even remember me.

And as she asked me numerous times what my name was, all I could do was cry.

Fear won.

In that moment it won and took over every ounce of my being and sadly in more moments than I’d like to admit to anyone, fear has been winning.

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I am trying so hard to be strong and stoic but I am tired. I am physically tired from the last few months and emotionally exhausted from the last 11 years, so is Jared and Brody, and so is our, sweet Loggie.

It is not a good place to be when we have such an enormous mountain ahead of us to climb. We are trying our best to take the time we need to find our strength. It is not always easy. Everyone has needs. The treatment plan is daunting and road to recovery is going to be long and hard on us all.

There is a plan moving forward and it is in motion. We are going to try to transition back to our home, back to normal (whatever that is?) and back to living the best life we can, together despite our new realities. Family time, and quality time together will be our priority now. It will be our biggest challenge to date.

As any parent would, all Jared and I want is for everything to be better right away and that just isn’t possible.

It feels like torture to have patience, to wait and to cling to hope.

It is hard to believe just three short months ago we were planning a family trek around Asia and today we are plotting out home care nurse schedules, insurance coverage, feeding regimens and chemo days.

It is humbling to think how quickly life can change, and trust me, it never gets easier to comprehend.

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We were also referred to Canuck Place this week and had our orientation meeting. Another blow.

For those of you who don’t know what Canuck Place is, it is a hospice.

But that isn’t how they sold it to us.

I was assured, hugged and then reassured that it was much more than just a place to take your child to die.

I was told it was a beautiful mansion full of love, respite and people to support us in every way possible as we care for Logan through this difficult time.

They tried to sell us on the laundry service, free massages, daily meal programs and family suites.

We didn’t completely bite.

We did, however, put our name on the list. We enrolled in the program and then left it up in the air.

We know the help is there if we need it but psychologically we can’t quite make the leap, just yet.

Free massage or not, our plan for now is to take Logan home, get through her chemo treatments, be together and wait for her to improve.

We are in the process of getting all our ducks in order to make that happen. It is a process that includes applying for grants, (universal healthcare my ass) getting an adjustable bed, a wheel chair rental, two IV poles, a minor bathroom renovation, a feed pump, syringes, nutrition, and all our new medication and schedules. Once that is set in stone we will be good to go.

In the meantime, we are spending the days going back and forth between home and hospital as part of our transition (or in other words a heck of a lot of driving and lifting of the wheelchair leaving both mom and Loggie wiped)

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Occupational therapy is sending someone next week to assess our house for any safety concerns, (I am hiding the cases of wine you’ve sent) and we are going to have a home care nursing team come by to check out our skills and give us the green light on our techniques.

I’ve been assured we will NOT be alone in this (insert sarcasm) although it feels very much like we are about to be.

Hopefully, all the logistics will be sorted by Monday and although we may not have all the equipment by then, we will go home soon after. Ideally, we would love a couple days alone to get our routine down pat before her next dose of chemo on Wednesday.

The days following chemo aren’t proving to be great, and there is some concern around the further effects of the therapy on her autonomic system.

But we aren’t going there.

This chemo has to work. Period.

There is no other option.

We’ve moved the goal post about as far as we can and now we have to wait.

For chemo to work

For Logan to get better

For our family to heal

Leaving the hospital is going to be terrifying in itself. Being in charge, knowing so much is out of your hands, yet rests on your shoulder is a burden I can’t find the words to explain.

When all you can do is hope while constantly battling off fear you realize sometimes being in the moment, actually, just really sucks.

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Time to regroup

If I had a dollar for every time someone said “Remember, you have to take care of yourself too”

I’d be a millionaire.

Everyone has good intentions but to tell you the truth, there is no taking care of yourself at a time like this. I can’t even comprehend what my needs are, let alone act on them.

Taking a break, in theory, seems like a good idea but leaving Logan’s side at a time like this feels completely foreign to me.

There is no shutting my mind off or doing ‘normal’ things.

There is no regrouping.

At least not in the beginning stages of this.

I know.

It is the fourth time.

The days following a relapse, learning your child has cancer again, and finding out you have to start a marathon of treatment from the beginning is all about surviving.

There are no luxuries. Everything becomes about basic needs.

Living no longer happens and functioning kicks in.

Conversation is hard to absorb. People talk but It’s impossible to absorb and stay engaged because your mind never stops racing with fear. You have so many thoughts and questions filed away and you feel desperate to remember all of them.

Friends come and go, people you forgot about reach out.

So many doctors swing by.

Suddenly you are living in a fish bowl.

The days seem to fly by but the hours and minutes just tick away and before you know it, it’s been a week since you were unknowingly admitted.
A week since chemo was actually started and you wondered, is this was REALLY happening again??? (WTF?)

It’s a week later and it finally hits you. Life has been flipped upside down and it is going to be a long time before it is your own again.

My only saving grace is knowing first and foremost I am a mother.

Regardless of the fact I feel completely lost in my own skin right now, nothing feels more natural or more important to me than being exactly where I am.

Beside my child.

It is because of this, all I truly want to do in these sacred, fragile, broken, quiet moments is WHATEVER Logan needs or wants of me.

Caring for her IS what makes me feel better.
Despite my tired eyes, ratty clothes, and fake smile being here with her feels very much like taking care of myself.
I want to take care of my family and the only thing I want to do right now is to be a mom.

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Happy Halloween. Grumpy about cancer.

Both Jared and I, as parents, decided long ago that the requirements of our kids would ALWAYS come long before our own.

We don’t take much time together, just the two of us.
We don’t spend much money on ourselves and we don’t dwell on the fact of what could have been instead of what is.

We don’t want to.

Many good things have come from this tragedy and we know if cancer didn’t strike our family we might have never had the same amazing experiences or the same amazing people.

We don’t like all that goes along with this, but we own it.

We love being together, we like who our kids have become and we appreciate the time we have together.

Our family has lived on the edge of a very steep cliff for many years.

We ‘get’ that Logan’s life is at stake and how easy it would be to fall over, lose our footing and crumble to the valley floor.

We also know none of this is in our control.

All we can do is what feels right for us, today, and every day, and being here with Logan around the clock is what feels very right.

In hindsight (BTW it is always 20/20) quitting my job and giving up my career was also right.
I’ve been able to be exactly where I’ve needed to be. I have less money in the bank and a bit more stress but I’ve also had a lot more time to be with my kids and I have no regrets.

I take peace in that.

I know Logan does too.

She never questions if I will be there for her or how much she is loved. She knows that come hell or high water there is no place else on earth Jared, Brody or I would ever be than be than here with her.

And that is true.

Nothing else matters.

Not now.

Now is about survival.

Now is crisis time and we are in the thick
of it.

We were admitted a week ago and since then each day has gotten harder and Logan has consistently gotten a little bit worse.

She had surgery, started NG feeds, had 14 doses of chemo, all of which are probably contributing to her continued overall decline.

Her electrolytes dropped and needed to be replaced this weekend. Her nausea got worse. She has had diarrhea, headaches and pain. Swallowing is getting harder, she has lost 5 lbs in a week and she has zero energy to engage, visit, text, snapchat or email.
She has been sleeping more than 20 hours a day and her blood pressure is more unstable at unusual times of the day.

Last night was a shocking 51/29

It’s been a bit of a mess to figure out.

Our minds are spinning and although we have an amazing team of doctors working around the clock to help her feel better we aren’t even close to where we need to be.

Logan desperately wants to go home.

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Feeling up to a little watercolour

But we have no idea if it will be possible anytime soon. We all hope so.
She’s sad and has cried every day about being in the hospital again. She doesn’t say much but I know she’s devastated about the entire situation.
We all are.

I feel deep compassion for her heartache and I too am sad, but to be honest I am also relieved to stay in this hospital a bit longer.
I am scared and nervous about being in charge and looking at her, the way things currently are, I know I am not ready to manage all of this, at home, on my own.

It is very stressful and I am still trying to wrap my head around all of  it (pardon the pun).

At least, here, in the hospital, we feel safe.

So, yet another new plan.

The ‘plans’ seem to be changing hourly these days. It’s how cancer works, you have to learn to roll with it.

Instead of rushing her to feel better, pushing her everyday to do more, to eat more, to drink more and to be awake more often, we are going to pull back.

Give her body some more time and space to process.

We are going to slow down the NG feeds and give her more fluids through her IV. We are going to try new doses of her blood pressure meds and give them at different times and we are going to keep ahead of the nausea and vomiting by giving her medications through her IV and her NG tube instead of forcing her to swallow them.

We are also going to let her sleep as much as she needs and work with physio to slowly get her up and moving again. We are going to have occupational therapy reassess her and we are going to introduce fluids and food by mouth again only if it is safe and she when feels up to it.

This plan may seem monotonous but it is a good plan. It will also allow her to rest while the chemotherapy eases into her system and does its job.
A few days from now her counts will be dropping. She may need blood or platelets. In just over a week she will be due for her next dose of chemo again.

It seems like everything is at a stand still but also moving forward. It feels overwhelming but also okay.

Logan needs this time to heal.

It’s about taking care of her and allowing her the space to regroup.
We are on board with the plan and are committed to being here with her.

Around the clock.

As long as it takes.

Thank you to all of you who are helping by sending your love, your words, clean pyjamas, onsies, and so much yummy food (and wine🍷😉). Our hearts and bellies are full. It is so very nice not to have to worry about cooking and to know how much you all care about us.

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A special shout out to my soul sister Kitty, who without asking showed up at the hospital at 10:30pm on Saturday night with a roll of quarters and a can of beer. #superrad

I called her crying and absolutely falling apart. I could barely breathe.

It is bound to happen.

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Post meltdown. Not one of my better moment. No pride.

Logan had been very sick that night and it ended up all over her clothing. Everything in the hospital was closed. I had only loonies but I needed quarters to do the laundry.
Being the resourceful gal I am, I begged outside of the emergency room entrance for about 20 mins in the pouring rain after a faulty vending machine left me with almost no money.
Feeling broken, I took my humiliated, defeated, and tired self to have a ‘break down’ in the 3R playroom.

I didn’t want Logan to hear me cry.

At some point I face-timed Kitty.

I never asked her to come, but she did anyway and it was exactly what I needed in the moment.

A friend.

Friends are one of the many blessings that surface during these hard times.

It is what we are most grateful for and we thankful to all of you for being such good ones to us.

We couldn’t ask for more….

Well…..except for maybe a nurse that encourages me to sneak out to my car for the odd glass of wine (Thanks Naomi) 😉😉

And bottles with screw tops and not cork screws…. (hint hint)

And cheaper parking,

And a full bathroom,

And bigger parent showers,

And….(you get the point)

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Wine in a Starbucks cup (it’s what we do) Hopefully I’m not going to get booted out of here. 😉

Yep, we really are easing right back into the swing of things here on the paediatric oncology ward. Its just like old times, only we are much older while the nurses are so much  younger….

Luckily, we know the ropes, and we know this is only one shitty week down, with many more uncertain times (and hopefully a few grand adventures ) to come.

After all, it is a life all over the map…..right?😘

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Life according to plan?

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Many of us spend our lives living a life ‘according to’.
‘According to’ means having a plan.

We as human beings seem to live to make plans. We need them. We strive to fill our calendars with them and even when we are not making any plans we are feel like we should be.

I am as guilty of it as the rest of you. No one likes to be stagnant.

Plans however, are often mistaken as goals and as such are often part of what motivates us. Plans to finish college, plans to find the perfect life partner, plans to land the best job, to buy a house, to have kids.

We plan for our future, our retirement, and even our death.

Our lives revolve around our plans and thus we spend a good portion of it in competition with ourselves and with others.
A life ‘according to’ dictates how we behave. It guides us down the natural path of what’s expected  but it also means that we are always in pursuit.
-Of the next big thing
-The next piece of the puzzle
-Of what we think will make us happy, successful, and complete.

The thing is, many of us never get there.

We never ‘arrive’ because plans always fall though, expectations always change, and somehow we always end up feeling like accepting where we are at (if it is not where we want to be) is a bit of a failure.

So what do we do?

We change our focus, readjust our outlook and set our sights on a new plan.

Most of us, including myself, measure our own life ‘according to’ plan by tangible, reachable goals but in doing so, sometimes, I think, we simply miss the point.

Plans don’t always give us purpose and direction.

Sometimes all they do is just complicate things.

Today, we got a plan to deal with Logan’s tumour progression.

I have felt very anxious for past month since we found out her tumour was growing and have desperately wanted a solid plan of action to deal with this problem.

I thought having a strategy was going to make us all feel stronger, more in control, and more empowered.

What I didn’t expect was receiving a plan and feeling more at a loss than ever.

Yesterday, I learned execution doesn’t always make you feel better.
Sometimes having a plan just makes you feel really, really, really afraid.

None the less, here is ours.

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Logan will start chemotherapy for the 4th time.

It will likely begin next week.

She will have surgery to put her port in as soon as possible. They are thinking Monday. She has been taking aspirin to lower her risk of a vascular stroke and she needs to be off the blood thinning medication for a week before they will risk putting her under the knife.

Chemo will likely start the next day.

To begin, we will take 5 days of an oral chemotherapy called Temodar.
The side effects are mainly the same as IV chemo except she shouldn’t lose all her hair and she will be able to take this medication in the comfort of her own home.
Her counts will drop, she will feel sick, and because she’s had so much chemo in the past she will likely need platelets and/or blood to help her bone marrow recover- hence the port.

There is a possibility of adding up to 3 additional chemotherapies to this oral regimen if we need them. Our oncologist said she open to doing so if Logan’s symptoms continue to progress during the first cycle of Temodar.

I have spent the last twenty four hours researching and reading studies and success rates on both options, temodar alone or temodar in combination with CCNU lomustine and vincristine.

There are two schools of thought. Ease her into this slowly and see how much toxicity she can handle or just go gangbusters and try to attack this thing with a more intense treatment. None of us know the right answer, I am not sure there is one.

Both are risky.

Of course the overall hope is the oral chemo will be strong enough to stabilize her tumour but soft enough it won’t totally damage her bone marrow any further. Which means she could take it longer. We just don’t know if it will work. The results are not outstanding but it is also a fairly new drug as far as chemotherapies go and information is fairly limited for Log’s type of tumour.

Truthfully, our options are all very limited and it will be a delicate balance between treating her cancer and maintaining a good quality of life.

We have been told that this oral chemo (or the combination of both) will likely not get rid of her tumour. The goal will be to stop it from growing any further and the absolute hope will be to see a little bit of shrinkage but probably nothing more.

Don’t get me wrong, this does not mean we are giving up- but it does mean we are being realists. It’s been 11 years, and we know where we are at. Each time this news is getting harder and harder to swallow. (Pardon the brain tumour pun)

Time is now our priority but a cure is still our hope.

If we can stabilize things with the oral chemo then we have more time to get her symptoms under control and hopefully she can feel better and enjoy more experiences with people she loves. Maybe we can book another trip, have some fun together and forget about all of this for a while longer. This is the goal.

Where things stand right now, we are basically swimming against the current.

Her symptoms are getting worse, likely because her tumour is progressing slightly as the weeks tick by.
We are all in agreement that it is time to treat the tumour because despite our efforts over the past two months nothing is working and she is steadily declining.

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We are now in a time crunch.

Our oncologist broke down and cried. She told us how sorry she was that we were ‘here’ again and she sobbed feeling responsible for not curing her. She reassured us that she was staying strong in her quest to help Logan get better. My heart broke for her along side of my own.
Its been a long road. She’s an amazingly smart, diligent and optimistic doctor yet she’s an incredibly tough nut to crack. Her communication and bedside manner has not always married up to what we needed in the moment but today when we saw her raw emotion we felt how deeply she cares about Logan and our whole family.
It was also in this moment I also realized with absolute truth that having her on our side is Logan’s best chance at survival.

No more fighting her.

No need for a new oncologist, we are and always have been, in this together.

We also met with her surgeon Dr. Steinbok.
He wholeheartedly agrees with the plan to try chemo first.
He thinks the risk of surgery far outweighs the benefit at this point.
His perspective is the damage and tumour are intertwined and are progressing systematically by blanketing normal and healthy brain tissue.
Her tumour is not growing like it did before, there is not a bulk or solid lump for him to deflate or take out and his attempt to help may cause her more harm than good.

He did suggest that because he’s turning 70 and is winding down in his career, we meet the neurosurgical team at VGH. Apparently he’s referred us to the ‘go to’ brain tumour guy over there.

Dr. Toyota will be our contact ‘just in case.’

We don’t know for sure but there may be a place for surgery down the line. Maybe a biopsy for further molecular studies, maybe a new technique will be discovered and if so we can be reassured we have one of the top brain surgeons in Vancouver at our finger tips.
Dr. Steinbok comforted us by telling us he’s not passing us off and assured us he will follow up on Logan’s case. He also pacified us by saying if it ever did come down to surgery and we wanted him to be in the OR, as long as he still had a license he’d happily assist.

Our endocrinologist stopped Logan’s growth hormone injection for obvious reasons, and the cardiology team hooked her up to two separate monitors so they can get a better picture of what’s going on inside her twenty four hours a day. We reviewed some test results, and were told Logan’s frozen tissue samples from previous surgeries had been sent back to pathology to double check for genetic mutations and certain changes.

And that was it.

We left with a new plan.

It’s not a plan we like. It is not where we want to be and it is definitely not fitting into our ‘life according to’ but it’s where we are at and in the words of Logan herself  “We are going to have to figure out a way to roll with it.”

And that is just what we will do.

Again, for the fourth time.

We will add more chemo beads to her already long necklace and we will readjust, refocus and remain hopeful that this is just one more of the many detours rerouting us in this life that is all over the f’ing map.

Here we go again……

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